"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘Moms’

A Letter To Emily’s Mom

This is a piece I wrote last year for the Our Stories of Strength anthology, Living with Ehlers-Danlos Syndrome. I am posting it here as a reminder to myself that we will get through our current struggles and as encouragement for all the moms out there who are facing a diagnosis and are scared to death. We will get through this together and I am thankful for everyone who has walked this journey with us.


Dear Emily’s Mom,

Everything is going to be okay. Really, it is.

Yes, I know Emily – your baby girl – has Ehlers-Danlos Syndrome and it seems like the end of the world. I know she is only 11 years old and she is losing everything that matters in her life and your heart is breaking for her and for yourself because your world has been unceremoniously turned upside down. Life as you knew it is a memory and a new life, an uncertain and daunting one, is looming.

Yes, I know she got EDS from her daddy and her brother has it too and you are thinking if only you had known when she was younger, maybe things wouldn’t have to be this bad for her. You are also feeling relief to finally have answers about all the strange symptoms she has had since she was a baby, while simultaneously knowing that relief is a bizarre emotion to be feeling with such a diagnosis.

Yes, I know you are terrified. I know you feel utterly unqualified to deal with this, guilty for not knowing sooner, and heartbroken to see your daughter suffering so. I know you can’t see where this path will lead and I know you hate not being in control.

Five years down the trail from where you sit now, broken and grieving at the beginning of the journey, I can see where you are going and where I have been. Which is why I can say, with certainty,  that everything is going to turn out fine. Truly it is.

Take a moment to breathe and absorb that truth. Everything is going to be okay.

That belief will be sorely tested in the days to come. You are going to have moments where you doubt, where you will not be able to see down the path you are on; moments where it won’t seem possible that the world will ever be right again. But, everything is going to be okay.

I promise.

Of course, “everything is going to be okay” doesn’t mean things will be easy or that events will fall out according to your liking. Spoiler Alert: Events will very rarely, if ever, fall out according to your liking. Honestly, what you think should happen is not always what needs to happen and that will be a hard lesson to learn… One of many hard lessons you will learn, I hate to say.

Somehow, though, even when things don’t go your way, things still turn out okay. When I say “everything will be okay”, what I mean is that, even in the most difficult circumstances, you will be able to honestly say ‘it is well with my soul’. You won’t get there over night, but you will get there.

Faith is at the heart of this journey and it will be your greatest weapon against all of the challenges and uncertainty you face. You will learn that you aren’t in control, no matter how much you want to be, and that you can either be driven crazy by that or simply believe God has more knowledge than you do so you can trust his plans for you. The circumstances you face are going to make you more vulnerable and more adrift than you ever have been and you will survive by leaning heavily on the promise in Romans that tells of how God is working to make all things – even EDS – good. What’s more, you will see that promise come true, time and time again. Soon, you will even come to see the journey as a gift.

Believe it or not, you are being given the amazing opportunity to become more…

More faithful. More patient. More compassionate. More real. More human. You will have the privilege of making friends and meeting people who you otherwise never would have met – a hidden world of people suffering from invisible, chronic illness will be revealed to you and you will be blessed by that revelation and by them.

You will learn the beauty of service: both serving the ones you love and being served by others who care about you. You will gain knowledge and have experiences that will shape you as a human being; a better human being than you were before. You will weep and laugh, pray and think, and learn and grow. It will be painful and profound, but you will find your purpose on this planet and you will grow in love and compassion.  This whole crazy awful business is a precious opportunity to evaluate your priorities, shore up relationships and get rid of all the unnecessary stuff in your life.

No, I know it doesn’t feel like an opportunity right now, it feels more like a punishment. But you aren’t being punished! Rain falls on the righteous and the unrighteous alike. You will witness God working through those bad things and transforming them into something beautiful. And, trust me, the beauty will come. Just watch for it. It will come in big, spectacular ways, in tiny, gentle whispers and though rainbows peeking through the storm clouds. It will come…

Now, I won’t lie…this journey you are on will not be easy. When I talk of the beauty to come, it might be hard to believe when the darkness is pressing in on all sides. Those moments are real and it is okay to despair, to grieve, to doubt – give yourself permission to feel whatever it is that you feel. You don’t have to always see the beauty of the journey – there are parts of it that are just plain hard. When things are rough, just cling to the hope that beauty will be coming during those dark times. That hope will be your anchor.

You are facing the fight of your life – there is no point in sugar coating it. From my vantage point, way down the road from where you are, I can look back and see the steep, rocky trail ahead of you, the pitfalls, the detours, the sleepless nights and the awful times when you are just going to have to sit tight and be patient. However, I can also see the molding of your character and the resilience that comes from the hard work of walking the path you are on; I can see the beauty being wrought from the ashes and the rainbows that have been scattered along the way.

From your vantage point, at the starting line of this marathon, you see only the unknown and it is terrifying. You have every right to be afraid. In fact, fear will be a tool to harness on your journey, but what you need to know is that fear, in the end, is not what will define your journey. Love is.

I know you will struggle to believe this in the beginning, but  the destination is worth the challenges of the journey. The journey will not destroy you. It will make you stronger than you ever thought you could be. You and yours will not only survive this journey – you will thrive.

Here’s another Spoiler Alert: Emily is alright. More than alright, in fact.

She is an amazing young lady. She is not defined nor defeated by her diagnosis. She has faced some pretty tough times and is a fierce fighter – you call her your hero and she has earned that title. And, tough as she is, she still has love and compassion aplenty. She is strong, smart, talented and funny. Your fears that she would not be able to withstand this challenge are completely unfounded. Just as your character is being shaped by this journey, so, too, is hers and, while you wish she could be trouble free, you know that is just the wishful thinking of a parent.  EDS is simply part of her life and she is learning to rise admirably to the challenges that she will face for the rest of her life.

Sure, there is the day-to-day EDS stuff to deal with – the dislocations, injuries, the pain, the headaches, the autonomic stuff. Unfortunately, those never go away. But, somehow, you both will adapt to all of that and learn to roll with it. Like I said, EDS does not define nor defeat her or you, for that matter.

You will find some good medical care along the way and you will find that willingness to think outside the box will serve you well. Family, friends, and faith will keep you strong. You will make mistakes but when you do you will learn from them and you will hone your knowledge to become a formidable advocate. And your daughter will learn how to advocate for herself from your example.

Long story short: you can do this.

I am still looking towards an unknown future so I can’t tell you how the journey ends. We have a long way to go and I have no crystal ball from here on out. What I can tell you, with confidence, is that, while I fully expect troubles because troubles are part of life,  I also have confidence that there will be rainbows that accompany the storms, weeping will turn to joy, God’s  mercies are new each morning and beauty will come from the ashes of the most difficult situation. So, whatever troubles are lurking around the next bend in the road, I know we will be alright.

And so will you.

Hang in there,

Beth (Emily’s Mom)






An Interview and a New Resource for EDS Parents


interview-notesWhile I was ‘away’, I have been up to mostly the same-old-same-old (polishing the manuscript, tweaking the book proposal, gathering info on literary agents, recovering from our ice skating birthday adventure and playing Angry Birds) but recently something new and pretty darn exciting came up and I would like to share it with you.

I was contacted by a web site called Kinsights – it is a parenting site where you can ask (and answer) questions on any number of topics related to child rearing – and they asked to do an interview with me. There is a new group for Ehlers-Danlos that has been started and this is a nice resource for parents who want to share information with others who are going through the same struggles.  You can also share notes, links, images and there is even a record keeping tool that they are hoping to customize so it is useful for the members of the EDS board. I will likely be reviewing some of the features of the site in the near future so I don’t want to go into too much detail now but I do hope you check it out. I will be ‘over there’, as much as I can, to answer questions. You just need to create an account and you can join in the conversations.



While you are there, please check out the interview they did with me:

Ehlers-Danlos Syndrome 101- An Interview with an EDS Mom

Are there alternative treatments or therapies for EDS?

What is important for parent to know who just received a diagnosis of EDS?

What advice do you have for parents trying to get a diagnosis for their child?

You won’t be surprised to see that it is in multiple posts, because my answers were, ahem, predictably ‘thorough’. (In my defense, there were quite a few questions and they all deserved a thoughtful answer.) I must say, the questions were very good and pertinent, I think, to parents who are managing a new or recent diagnosis for their child and I have been impressed with the willingness of the Kinsights’ staff to research and learn the basics in order to promote the EDS board so it can be as helpful as possible to EDS parents.

I was honored to be asked to contribute and I hope my answers, for those who can wade through them, are useful.




For anyone popping in from Kinsights:


Catching up – Good News and Bad News

Been too long since I posted – been kind of busy with all kinds of things going on. My biggest reason for not posting for a while is that I was on vacation. Hubby and I roamed around his home state of Illinois for a week (I will spare you the photo montage), sentimentally finishing off our trip with watching the fireworks at Stockton so he could revisit his childhood. It was just him and I:  Luke had to work and wouldn’t have wanted to come with even if he didn’t have work.

And Emily stayed home as well, not without a fair amount of anxiety for her and I both. I didn’t post about our worries over our trip beforehand because, while I share a lot here, even I am not stupid enough to advertise that my 15 yo daughter would be staying home without parents for a week. She wasn’t exactly alone – Luke was here to hold down the fort and my parents are two houses down from us…but still, you don’t leave a chronically ill kid home without some trepidation.

Last time we went to Illinois and left Emily home, she jacked up her foot and we had to rush home to take her to the emergency room. And by rush home, I mean trying desperately to shave time off an 8 hour drive (straight through, much longer with needed stops) and, instead,  ending up sitting in traffic for an hour plus on 70 between Indy and home after a horrible accident turned the interstate into a parking lot. Knowing that Em was in pain and waiting for us to get to her. Of course, the ER ended up doing absolutely nothing for her – except the x-ray they took eventually revealed a more serious injury and led to an MRI which indicated RSD. To this day, we still don’t know exactly what the true deal with her foot was but at the time, we just knew it was bad enough for her to tearfully ask us to come home. Bad memories. Anytime I leave the child, something bad happens…

Almost 3 years later, many of the same issues remain in play but she is 3 years older and has a firm diagnosis and things are better. So, I agreed to go and just prayed she would be ok. I worried about her anxiety, I worried if she would remember to take her meds as scheduled, I worried that she wouldn’t sleep and that she would get hurt and… well, you get the idea.

The first leg of our trip, I had no cell phone coverage in our hotel room and had to go out in the parking lot to actually talk to Em and check in with her. The last leg of our trip I had no cell phone coverage at all and could only communicate by FB messages. In the middle of our trip, I had bars and received a tearful call from her that she had found our cat, Neera (not Padme, thank God!), dead. Neera was old and decrepit but I never dreamed she would die on Emily’s watch.

Sigh… stupid, moronic precious, sweet, considerate cat.

So, while I talked to my distraught girl, Andrew called my folks, so Em wouldn’t have to go through explaining it all again, and they went down and buried Neera. Em put a collar on her that Em had made for Padme and gave her a fitting sending off, asking that she be buried next to where we buried Simon, our beloved Pug. (If you really want to know about our animals, you can check out the page on her blog where she has posted pictures. Neera is towards the top, Simon is at the very bottom – there are some shady characters in between who star in a series she is doing for her blog, pay no attention to them!) Sasha was frantic, on top of being depressed because I had abandoned him – that afternoon he had been left down at my parents and knew, in that way that dogs have, that something was terribly wrong. Padme, well, she was disturbed in that way that cats have, which probably means she will be psycho for awhile.

Em messaged me a picture the next day…she had taken Padme out in the back yard on her harness. Padme walked over to where Neera was buried, laid down and refused to move.


At any rate, Em handled it remarkably well, considering. Cast a bit of a pall on our evening and the remainder of the week, but she was a trooper – it really was Neera’s time and we are glad she is in a better place. She was, frankly, a pain in the butt in life so it comes as no surprise that her death was also inconvenient. RIP Neera. We are now a 2 pet family instead of a 4 pet family. 😦

On a happier note…

Our absence allowed Em some independence and she has, rather miraculously, got herself on a better sleeping schedule. She is getting herself up at a better time – still late by normal standards but wonderful for her. She is going to sleep a little better, because she knows her alarm will be going off in the morning. She has taken over responsibility for waking up and taking her morning meds – normally, I go wake her up, give her her meds and she goes back to sleep for a few hours. Now she is taking them on her own. I still worry about it, but I am also happy to see her taking over that responsibility. She only slept through her alarm once while I was gone and took her meds late, so I was really proud of her!

She did her own laundry while I was gone and she cleaned house for me – it was a pleasant surprise to walk in to a much cleaner house than I left. Her anxiety wasn’t as bad as we expected, so that was another pleasant surprise.

All in all, Andrew and I had some needed time away and Emily did very well in our absence. Much better than I expected and even finding her kitty deceased didn’t ruin the progress she made last week.

Hopefully now I can get back to posting regularly. I have a few things going on and a lot to talk about coming up, so stay tuned!


The Assertive Method


In my post, Diamox Pointers, I refer to using the ‘Assertive Method’ to help you get the treatment you want to try but didn’t give much information at all about it – just a vague, unhelpful reference. I have seen this method mentioned in a conversation on Inspire (the EDNF message board) and, unfortunately, still cannot find the original post I saw it in. But, now, a couple years after I wrote the post about Diamox, I have decided to try and clarify what I was referring to. I have received several emails recently from folks who are desperately trying to find a doctor who will let them try Diamox, so I feel this is a timely post – if more than 2 years late!

The Assertive Method is effective in many situations but is well suited for use by chronic illness patients when interacting with doctors. It gives the patient a way to get what is wanted or needed without resorting to methods that may be overly emotional or combative and which would be viewed negatively. Certainly, it is not a foolproof method- there are some situations that there are no easy answers. But, it can be very effective in the kinds of situations patients find themselves in and empowering for a person struggling to be heard.

The Assertive Method

This method consists of four statements, delivered in one concise sentence each:

  1. This is the situation
  2. This is how I feel about it
  3. This is what I want you to do
  4. What do you think?

Once you have made your 4 statements, you say nothing until the other person finishes speaking.

Possible Outcomes and Your Responses:

  • If you get what you asked for, wonderful. Be polite and express your genuine appreciation.
  • If you get an acceptable alternative, show your willingness to cooperate and say “That seems reasonable, I’m willing to try it.”
  • If the result is unclear or you feel avoids your request, ask for further explanation and/or repeat steps 3 and 4.
  • If you don’t get your original request or an acceptable alternative say, “I understand, but [this is what I want you to do].” Do not argue, just restate steps 3 and 4 until you get the result you are asking for.
  • If you are offered an option that you must refuse, briefly say no and why: “No, I can’t/won’t do that because it will (hurt me, conflicts with other treatments/advice, etc.)”. If pressed, repeat your statement again, “I understand, but I can’t/won’t do that because it will (hurt me, conflicts with other treatments/advice, etc.)” And then restate steps 3 and 4 again.

Things to Consider

  • If it seems that the other person is unclear on steps  1 or 2, go ahead and restate them at any point you feel it necessary.
  • Sometimes silence is golden. If there is a pregnant pause or silence while the other person thinks, let it work for you and don’t be tempted to fill the void too soon. If there is a pregnant pause after YOU finish speaking, stand your ground and let it stretch out. Your objective is not to argue, but to make your 4 statements until you get a response. Your statements simply place the ball in the other person’s court, so to speak
  • If you feel you need to check that the other person understands your requests, ask something like, “Am I explaining myself?” or   “Am I being clear about the situation?”. I like to ask ‘Does that make sense?” in a genuine tone.  These kinds of statements are not as in-your-face  as asking “Do you understand?” or “Are you listening?”.
  • You can practice this ahead of time if you need to. You can role play with a friend or loved one until you feel comfortable – it could be helpful if they can throw out possible responses or even crazy ones, just to give you practice staying on script.  Or you can just rehearse mentally until you are confident you know the steps and can follow your script.
  • You can and should adapt this to the situation and your own personality. You can soften the script, to be less confrontational, as long as you remember that you are there to get results. You can be very straight shooting, to be more pointed, as long as you remember that you are not there to fight. Make it your own and be willing to shift to a question asking or discussion phase when appropriate.
  • Remember, what you ask for is key. If you want a doctor to consider letting you try Diamox, per the Driscoll Theory, you might make step 3 something like: “I want you to read  the Driscoll Theory (best if you have copies of articles or something to hand him) and consider prescribing Diamox, because I believe it could help me.” You don’t have to  (nor would it be wise) to say, “I want you to prescribe Diamox.” What you really want is for the doctor to get on board and consider your research, so phrase it accordingly.
  • This is not the only method or even the best method to use in all situations. Sometimes, you will want a sincere back and forth with your physician or, another time, you may need his specific advice on treatment. You do not need or want to always go in with an agenda. BUT, for situations like asking for a specific medication or treatment from a doctor who is reluctant or where you need to assess his willingness to listen to you, this can be an effective method.

Continue the 4 steps until you achieve a satisfactory outcome or until you see no point in continuing the conversation. The point is to a) be very specific in communicating your needs b) to communicate in such a way that does not burn bridges or cause offense and c) give you a script to use in difficult situations.

We all have found ourselves in situations that cause us to get so flustered or intimidated that we are at a loss for words. Considering how long we often have to wait to see a specialist and how important a visit to the doctor can be, this method may be a way for you to politely get your point across in a composed and assertive way, avoiding displays of emotion that undermine your goals or blanking completely, wasting the visit and going home dissatisfied.

If you use this, let me know how it goes – for good or ill!



What was the point? #FreeJustina

Saturday, May 24th, Justina Pelletier turned 16:

free justina birthday

She is still in Massachusetts DCF custody, although the Connecticut facility she was moved to is working on reuniting her with her family. On the 24th, there was a birthday party for Justina which her family attended. Also on the 24th, in Boston, was a huge rally in her honor. The media is estimating thousands were in attendance – initial reports said 2,000, later reports estimated 4,000.

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As I look at the pictures and videos from Justina’s birthday party and the rally, serious questions overshadow the joy I feel – joy that Justina is in a better situation, that she had a lovely party with her family and friends, that thousands of people across the country care so much for her.

And I wonder, what was the point of all the separation, the pain, the suffering, the conflict, the lines drawn in the sand? What has been gained?

DCF and the powers-that-be in Massachusetts are clearly trying to extricate themselves from an unpleasant situation. After months of Governor Patrick saying he could do nothing, the HHS secretary comes up with a soft ball plan that creates swift movement towards resolution. The Susan Wayne Center in Connecticut is clearly playing the good cop and moving the situation towards reunification after 14 long, contentious months of zero progress in Massachusetts.

The Pelletiers finally have a way out (hopefully) of this nightmare, although that way should have been provided months ago. They are going along with the reunification plan offered by HHS – they have to visit Justina (duh, as if that is a problem), they have to attend family therapy (they report this has happened), they have  to meet with DCF to discuss the ‘progress’ they are making (like they could avoid this?).  After some complaints from the family regarding how long it was taking to schedule it, they will be fulfilling the requirement to meet with Tufts  on the 30th to discuss Justina’s medical plan going forward and it looks like she could be home not long after that meeting, according to Rev. Mahoney.

Beyond the plan and the new placement and the tantalizing whispers of ‘home’, I still have to ask, what was the point of all of this?

Let’s assume for the sake of argument  that Justina does have somatic symptoms. Let’s assume Linda and Lou have been medically abusing Justina: Ok, they clearly do not fit into the extreme category of Munchausens by Proxy (where a parent takes actions that makes their child sick: i.e. poisons, smothers, etc) …maybe they could be classified as having Factitious Disorder – a broad category in which parents ‘gain’ to some degree from having an ill child or perhaps they just meet the overly broad criteria for Medical Child Abuse.

Mind you, I don’t believe this to be true and do not concede this is what is happening, nor do I remotely buy the concept that these diagnoses are commonplace. Just bear with me for a moment as we ponder this situation…

Assuming that this is a family who is struggling with dealing with a serious chronic illness and assuming they had less-than-optimal responses to said chronic illness…what was gained from this traumatic 15 month intervention by BCH and DCF?

If Justina has somatic symptoms in addition to mitochondrial disease, how has she been ‘helped’ in any way by being separated from her family for 15 months? By being kept in the most restrictive environment – housed in a series of psych facilities with seriously mentally ill youth? By being kept away from her normal life: from her school, from her church, from her friends, from her pets? How has any of this helped Justina get better?

The treatment for psychosomatic symptoms is not anything resembling what they have done to this child. If anything, they have created worse issues than she had before. If she had stress and a crazy family that led to her physical symptoms worsening, she now has FAR MORE stress and a FAR CRAZIER family by virtue of the hostile actions of BCH and DCF. She will live the rest of her life healing from this experience. It will affect her whole life – who she can trust, how she interacts with the medical community, how she views her self. Was the need to intervene worth all the irreparable damage?

If Linda (let’s be honest, this is who the finger is being pointed at here, because moms of medically complex children have a great big target on their backs) ‘has’ this factitious disorder, which is, from a chronic illness perspective, truly one of the most asinine diagnoses conceived of by psychiatry,  and has gained from her daughter’s illness in some way – attention, acclaim, fame, sympathy, whatever – how has this experience helped her problems diminish? Would this type of experience not feed her alleged issues by reinforcing that negative behavior? Have they offered any method of helping Linda cope better?  Have they offered her any kind of support services?

If Linda was not ‘coping well’ with the stress of having ill children, how could having her youngest taken away in such a traumatic way possibly help her cope better? If the family dynamics were less than ideal, how has throwing them into this impossible situation HELPED them improve? This family has been harmed, not helped, by the do-gooders in Massachusetts. They will spend the rest of their lives picking up the pieces.

I am appalled that officials at every level of this debacle are more concerned with their policies, political aspirations and exit strategies than the health and well-being of this child and family. If they actually cared about this child and her family and thought there was a problem, they could have helped instead of taking the actions they took. If we are to believe what BCH and DCF says about Justina and Linda and the Pelletiers is true, it then becomes obvious that they have failed the entire Pelletier family miserably and the entire rare disease and chronic illness population by extension.

Which is worse: that they are wrong about this family and made a grievous mistake or that they are right and, in their self-righteousness, utterly failed the family in every possible way? I think the latter might be worse – I could forgive an honest mistake, if apologies and restitution were given and changes were made to prevent it from happening again. I have a harder time forgiving utter failure from self-appointed, self-righteous experts, ‘omnipotent moral busybodies’ as C.S. Lewis calls them, who claim to know it all and whose policies harm rather than help.

After all is said and done, I end up in the same place I began in February:

Psychiatry needs to clean up its act: drastic changes need to be made to the DSM and to the way the field approaches families in need. They need to stop labeling chronically ill people with somatic symptom disorder and climb out of bed with the pharmaceutical companies. They could also stop being surprised that people do not trust them when they behave in such morally reprehensible ways.

Boston Children’s Hospital bears a huge responsibility for pulling the 51A trigger instead of offering help and support if they believed this family needed intervention. Do they have no ability to offer help to families who are rightfully struggling with the challenges and stigma of chronic illness beyond ripping kids away and locking them on Bader 5? (And, by the way, close down Bader 5 – it is irredeemably toxic.) How about training your people on how to interact with families living with chronic illness and come up with ways to HELP THEM instead of taking their children. Change your pro parent-ectomy climate to a pro family one and maybe you have a shot at people trusting you again.

DCF needs to get itself a medical director and implement well reasoned policies that protect families living with rare diseases. There are ways – good ways, effective ways – this issue can be dealt with from an official point of view. Removal of the child can only be a last resort and when it is necessary, offer real solutions towards reunification. Inject some common sense into the department and see how it frees you up to take care of the kids who need your protection.

When all is said and done, I am disgusted. Disgusted at the waste: waste of money, of resources, of precious time, and, most of all, of a child’s humanity and dignity.

And I still do not know what the point of all this was. I wonder if anyone really does…


Four Years of EDS


May of 2010 was a watershed month for us. On the 10th we went on a field trip to the zoo. Our lives have never been the same since that day. I remember being a little concerned about how Em’s legs would handle all the walking that a trip to the zoo would require; I had no idea that that walking would send her into a flair that would take years to recover from. The fallout from that trip resulted in us figuring out that these strange symptoms were, indeed, EDS and embarking on a long and winding journey that continues even today.

That first May was a time of being battered by this storm that suddenly appeared in our lives. We were in shock and just trying to figure out how to survive. I don’t know that I was even aware that May that it was EDS Awareness Month and, if I did, it slipped by with no acknowledgement on my part. Truth is, I was desperately trying to become aware myself, I had no reserves for sharing knowledge with anyone.

Our first proper EDS Awareness Month, in 2011, found me in even deeper despair than the previous one did, Emily receiving an official diagnosis by the country’s leading EDS expert notwithstanding. For, at the inception of the storm in 2010, there was still hope that perhaps Emily would not be a bad case, that she would avoid much of the horror stories I was reading. By May of  2011, we were in a very low spot because she had not avoided the worst and was clearly a bad case. Not only did she have daily dislocations and severe pain, but she had been plagued by debilitating autonomic symptoms and the neurological symptoms had progressed to the point of the idea of a cervical fusion being floated. She had been in a wheelchair for months at that point and there seemed to be little hope. Little did we know that hope was just around the corner. The next month I would find The Answer  and Em’s life was about to be wrestled back.

May of 2012, saw us frustratingly bowed down by her sudden appendectomy, after months of stunning improvement. We had found the Driscoll Theory and eventually had the opportunity to try Diamox. What a difference it made. Truly, Em had her life back. No, it wasn’t all perfect but the reduction and control of that awful headache gave us the opening to make real progress. To have that scary surgery threaten all of our progress was extremely frustrating. However, we greeted May that year with a profound thankfulness, because we understood how close we came to losing her.


In 2013, we flipped the calendar page from April to May with some weariness and caution. Not only were we apprehensive about what the coming year might look like,  but Em was still not completely over her appendectomy; that May, she wasn’t totally recuperated but was finally making headway again. We started getting cautiously optimistic about the future. She was generally doing better, seemed to be stabilizing. It was almost too good to believe.


This May, our fourth year of [knowingly] living with EDS behind us, we can look back and see how far we have come. Em is still struggling, but that is to be expected. She is doing well on her medication regime, it is giving her the opportunity to have a life. She has, after all these years, finally been able to do theatre again. She was a nun in The Sound of Music and it was an amazing experience. Maybe it didn’t make up for all the lost years, but it did give her something to be proud of and to aim for.

We have learned a lot over these past 4 years. I have grown and this blog has grown with me. I started off blogging in the depths of despair, in our darkest season. I truly didn’t know if anyone would ever read, but I had to get the words and fear and frustration out somehow. And this blog became my diary, my journal,  my confidante, my support, my sounding board, and now a platform to share our experience and our hope with others.

The purpose of having a month of awareness for EDS is to help others learn about it – to share information about symptoms and treatment, to reach out and support those who live with it and to offer hope, along with reality. To communicate: You are not alone. I remember so vividly reading the horror stories and feeling my heart shatter as I faced my daughter’s uncertain future. I remember clinging to the few hopeful stories I found, desperately clinging to the faint hope they offered.

And, it has been my greatest privilege to offer that hope to others: Life with EDS can be good. Research and treatments are improving the lives of those with EDS and the future gets brighter with every day that passes, even for those suffering the most. Life with EDS is worthwhile and beautiful.  There is a truth and beauty and grace that can bloom in the midst of suffering; you can be happy even living with EDS. Life with EDS is ok. You will be ok. Really.

So, share your knowledge or soak it up, whichever you need to do. Use this month as a path to greater knowledge and let us all spread the word about EDS. We may not be able to cure it, but we can fight it and, together, we can beat it.

The Impact of #FreeJustina on the Chronically Ill

Justina and her mom, Linda, at a recent visit.

It is no secret that Justina Pelletier’s sad story is being taken as a very real threat by the chronically ill – particularly those chronically ill with rare and misunderstood diseases. Mito is one; EDS is another among so many more conditions that medicine just does not understand. It is ridiculous and appalling that a doctor in an ER can say, ‘I just don’t believe (Fill in the blank) is real and even if it was, you don’t have it.’, overturning or at least questioning the diagnosis of a genuine expert on (Fill in the blank).

Yet it happens ALL THE TIME.

Justina’s plight simply reinforces what we already know of medicine. And what we already know is not good.

Physicians are supposed to ‘First, do no harm‘. Setting aside Justina’s specific situation (we KNOW they have done enormous harm to her and I don’t need to make that case in this post), I would argue that great harm has been done beyond Justina and her family: enormous and, perhaps irreparable, harm has been done to the precious and essential  trust and faith patients have in their doctors.

Sadly, the people who are the most vulnerable, the most medically needy and most need to trust the medical community are the very people who will be hit the hardest by the betrayal of Justina’s Boston Children’s doctors. How can any parent of an ill child walk into a hospital and trust the professionals they encounter? How can the fear of losing their child to a doctor’s ego or financial agenda not be a poison in the minds of every parent when they walk into a ER?

Even in the year 2014, in an era of amazing medical  discoveries, people are still suspicious of doctors and medicine in general. And now, they have been given a very good reason to be suspicious. There will be people who hear about Justina and refuse to take their child or themselves or their spouse or their mom to a physician even when it is absolutely needed.

I predict that someone, probably more than one someone, will die – directly or indirectly – because of the fear engendered by this case. The good doctors are going to have to work twice as hard to earn trust and parents are going to be rightfully suspicious for a long time to come. That is directly on the heads of the people who are incarcerated Justina.

Beyond that, the harm done to the mental health field is dangerous – as if the stigma of mental illness isn’t already enough to dissuade people from seeking treatment. I have had my eyes opened WIDE to the abuses and corruption in the field, yet, I still see that it is needed. There are people who actually have treatable illnesses – who need the treatments and medications that are given by knowledgeable professionals.

Remember Sidney Freedman, from M*A*S*H? My favorite psychiatrist, he was always good from some down-to-earth advice and he never acted like he was God.

And there are some good ones who are not succumbing to the lure of payoffs and what are essentially bribes, who are intellectually honest about the foibles of their profession.

But, the public, who is even more suspicious of psychiatrists than they are of physicians, won’t notice the good ones, will rightly see the bad ones as witch doctors who are lining their pockets through the torture of the innocent, and will eschew any and all forms of mental health treatment.

In my opinion, this is a critical crossroads for the chronically ill. Not only are they going to be far more suspicious of their doctors – from the lowly GP to the exalted specialist, but any suggestion of seeing a mental health professional will be seen as a threat.

Let’s be honest, most people living with chronic illness could use a good therapist. It is hard and stressful and unpleasant to live with chronic illness; depression and anxiety are part of the package. If you are are living with a chronic condition, you are not sick because you are depressed, you are depressed BECAUSE you are sick! If ever there were people who could benefit from appropriate mental health treatment, it is the chronically ill.  A good therapist and perhaps anti-depressants and cognitive behavior training could come in pretty handy…

Yet, I am less inclined to trust a therapist or psychologist now than I was before, and that, frankly, wasn’t much. Without a doubt, I am not the only with that opinion. This poses a real risk for the chronically ill and, again, they are the ones who will pay the price of the Pelletier case for a long time to come.

We know the doctors and institutions involved in Justina’s case and others like it are benefiting in almost every way – financially, professionally and personally. We know the flow of money is absolutely obscene and that ‘wards of the state’ are used as commodities at Boston Children’s Hospital: resources to use up and send home when there is no more benefit to be gained from them – either in a coffin or emotionally broken.

We know who is being harmed by this: the vulnerable, the medically needy, the hurting and the weak. The ones who need the best medical care will be less likely to seek it and will suffer for the fear engendered by Justina’s case.

So, the weak and the ill are damaged, scarred and victimized while the dishonest medical professionals rake in the money.

What ever happened to ‘do no harm’?

Is the harm done to the chronically ill worth the financial gain they accrue? Is the damage to the medical profession in general worth the money lining their pockets? Is the destruction of the precious doctor-patient relationship worth the so called good they think they do?

Sadly, the evidence indicates they absolutely think it is worth it. I just don’t know how they live with themselves.

image courtesy of justinatkins.com


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