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Friday, December 7, 2018

Thank You

The response to my last post, The Abyss, was nothing short of stunning.  Dozens of people reached out to me. I received a remarkable number of emails, comments sent to my blog, Facebook messages, texts, and phone calls. The expression of concern on the part of so many was humbling. I have not as yet responded to all who contacted me but I will do so shortly. To say I was deeply touched would be an incredible understatement. I was in fact moved to tears many times. Aside from the touching words, I was taken aback by the number of people who implored me to keep writing and fighting against ableism and social injustice people with a disability routinely experience. More than a few people took me to task too. Some believed  my words reflected self pity and depression. To this charge I plead guilty. At 3AM I was feeling pitiful. I was and remain depressed. The words of appreciation and tough love have made me realize I have to live up to my own words and deeds thus I will continue to blog and fight for what I believe is important--the equal rights of people with a disability.

Since I wrote The Abyss a few things have become clear. An MRI revealed my wound has not spread to my bone. The wound is not life threatening at this time. This is excellent news. The not so good news is that I must severely restrict the amount of time I sit up. I do my level best not to sit up for more than 100 minutes in total a day. I limit my transfers as much as possible. I lay supine almost all day and night. I find this nothing short of torturous mentally and physically. The social isolation I am experiencing is severe. The depression I am experiencing is equally severe. Solutions are obvious for my physical recovery. Stay off my wound and remain free of pressure. This is solid medical advice. Such a course of action has worked in the past and will likely work again. The problem with this medical plan of action (really the lack of any action) is the social context. And here is where I think wound care departments nationwide fail their patients.

Wound care physicians are superb at caring for wounds such as mine. The physical component of healing a wound can be tricky and requires creativity and out of the box thinking. Hence wound care professionals are up to date with the latest products and are truly dedicated to healing people with severe wounds. However, all wound care departments fail miserably in three ways. First, pain management. In my experience physicians ask about pain on the initial consult but never seriously address the issue. I have been told repeatedly that as a paralyzed man I am not in need of pain medication. Again and again I have been told, with relief, that if you are paralyzed you cannot experience pain. This is simply wrong. I do experience pain. Though far from typical pain, I nonetheless feel when a dressing is changed. This an exhausting experience and hours later I feel significant pain for hours on end. No wound care doctor or health care professional has ever engaged in a discussion about the pain I experience. I can only assume I am expected to suck it up and be silent and compliant.

The second failure of wound care is the complete lack of attention paid to one's diet and exercise. Wound care doctors advise people such as myself to eat a diet high in protein. Good advice for sure. But if I am severely limiting my sitting time how do I make high protein meals quickly? I need to make, consume, and clean up my meal in 15 minutes or less. Even boxed meals such as Blue Apron advertise cook and prep times of 30 minutes. I do not have that much time sit up. I am lucky however. I have the social support of others who do food shopping for me. Exactly, what are others more socially isolated supposed to do? I have also been advised to be well hydrated. Again, good advice however this will require multiple transfers throughout the day. Those transfers are supposed to be limited. Thus eating and drinking, key components to healing, place me in a Catch 22 situation. No matter what I do I am wrong. None of this begins to address the loss of muscle mass and fitness. No physical therapy consult is arranged and any mention of fitness is met with a stoney silence or simple I don't know.

The third and biggest failure of wound care is the utter disregard to mental health. There is no question I am experiencing situational depression. I am bed bound and have been told to be pressure free and limit transfers. In other words I am house bound and bed bound. I cannot leave my home. I must spend 99% of my day in bed. How exactly can I not be depressed? This sort of social isolation would be deemed cruel and unusual punishment if I were convicted of a crime and sent to a prison. No wound care program, addresses mental health. No wound care program has an online or real life support group. No wound care programs work with mental health professionals, make such referrals or provide in home support. People such as myself are left alone and must fend for themselves for months on end. The social isolation associated with disability is magnified greatly when bed bound. Days are long and writing and basic functioning is difficult in the extreme. Healing a wound is thus crushing to one's sense of self and psyche. And I am lucky as an academic. I can work from my bed and this is highly unusual. People with a typical 9 to 5 job are screwed.

The lack of attention to mental health, in my case depression, directly impacts my ability heal. My limited sitting prevents me from making a meal enjoyable to eat and my depressed state makes me not want to eat at all. After my last appointment at wound care I was so depressed and traumatized I did not eat for three days. Why do wound care departments ignore such a vital issue? I can only assume they believe my life and others they see has less value. Surely I have no career or family or social obligations. Being forced to cancel all plans for weeks and months to come means nothing to wound care. They see a wound. I see my life put on hold. I see a bleak future.

Complicating the above, is the fact the only time I do get out is for medical treatment. As most people will tell you, accessing health care for people with a disability is deeply problematic. For instance, the MRI I had last week surely did not help my wound or mental state. Hospitals are grossly inaccessible and hostile social  environments. At the hospital staffers in radiology referred to me repeatedly as "wheelchair". When I asked where my wheelchair would be secured during the MRI I was told the hallway. When I expressed serious concern, especially about possible theft, my worries were dismissed. When I persisted I was told it did not matter; if my wheelchair was stolen the hospital was liable and would replace it. Another staffer over hearing this conversation chimed in she understood my concern because someone stole her bike recently. Yes my wheelchair and a bike are equivalent. It did not take me more than minutes to realize there was absolutely no accommodation for disability. Rigid and inflexible protocol was mindlessly followed. My different body and needs were an inconvenience to staff. None of this addresses the fact there was no place to sit in the waiting room. The lowered desk area at check in was filled with useless promotional material. I was also given a yellow hospital ID and automatically deemed a fall risk. No one asked when I had last fallen. All this took place at one of the best hospitals in the state of Colorado.

I believe wound care departments are not meeting the physical and emotional needs of their patients. It is my hope wound care professionals will take the time to see more than a wound. They need to address all the variables that go into healing a wound from start to finish. This will require a very different and far more proactive approach. Far more people need to be involved. Nutritionists, mental health professionals, physical and occupational therapy, peer support, home visits and much more. With all seriousness, lives are at stake. I am nowhere near healed and struggling mightily. Wound care is utterly clueless because they have not asked or simply dismissed or ignored my concerns. This is in no way a knock on the wound care professionals overseeing my care. This is an indictment on every wound care program in the nation. The wound care professionals I see are just doing their job and that is the problem.

12 comments:

JJ said...

I think I suggested this before but if I didnt - I think a standing wheelchair could end your pressure sores problem - it could remove pressure from the danger areas (glutes/under thighs?) by removing pressure from there & redistributing it to your feet for awhile & vice versa (standing to sitting & sitting to standing mode I think is easy to switch) I think theyre doable in manual & electric forms & I think electric could also be safer since you have had recent cardiac problems & if you develop any wounds while using one (which may not happen any more if you did get a standing wheelchair)
then you could atleast still function I think by being able to move around while in standing mode (while sores heal on your glutes/under thigh areas?) & socialize & do whatever you need to do.

- JJ

JJ said...

I realize its difficult to get the healthcare that one needs on america specially as a disabled person but it could help, so it might something worth fighting to get

Erin Manning said...

thank you for finding the strength to continue. I am a quiet reader of several years and really appreciate all you do. I have cited your work and taught it. I wish there were ways to facIlitate sociality under these conditions... I wish you well, and hope you know there are many of us who lurk but care deeply.
Erin

JJ said...

in addition to helping/stopping pressure sores - standing wheelchairs I think, also help with stomach/intestinal motility - which probably as you know can be a problem to those that are frequently sitting on a wheelchair

John Kelly said...

Hi Bill, what you wrote really resonates with me. I have been in bed basically all year. And it is incredibly, painfully, isolating. And depressing. I have gotten some relief from a full spectrum lamp. Tonight I am trying not to fall asleep because the stomach headache bug I have seems to be causing me sleep apnea within seconds of falling asleep. At least I don't have to go to the hospital, not yet anyway. And it is very difficult to work, physically and mechanically, and especially emotionally. I will be in touch, Bill, glad you are continuing on :-).

Liz said...

The lack of concern for our mental well being is so bad! It's a traumatic and difficult thing to deal with and then as you point out the practical details of how to run your life while healing, with no home visits or care, are also left out. It is very strange to me how this model of "health care" has developed such that getting care by going to a hospital is so difficult and often actively harmful in some other axis.

Lizzy Bee said...

I only just found your blog, what an insightful writing style you have. I am sorry you are going through such a difficult time, the effects of social isolation on mental and physical well being should not be underestimated. So many so called support systems fail in times of need, or simply turn out to be box ticking exercises. I am far away in the UK, so no good for practical help, but please do feel free to get in touch any time, to chat, let off steam or bounce around ideas. Any contact will be warmly received. Best wishes, Liz . (you can reach me via FB/Messenger

https://m.facebook.com/lizzybeepurple?ref=bookmarks)

Alix said...

Thank you for posting this! I've had similar thoughts about lymphedema treatment and always wondered if I was alone in thinking how ridiculous specialized chronic medical care can be.

Second Summit said...

Thanks so much for this. You make such good points, and so clearly, about some of the things that are wrong with our present system of healthcare. I wish I had solutions for even a few of them. But bringing attention to them is a start.

A recent opportunity to chat with Physical Therapy professionals suggests that some of them have an idea of what you're going through, but feel hampered by high caseloads and assorted bureaucracy. I suspect the truth is that many higher-up admins don't actually care about patients except in a very broad aggregate.

I'm delighted you will keep writing and wonder if there's anything your far-flung readership can do to alleviate some of the present suffering.

Kelly said...

I hope you do continue to write, as I have learned much from you and have also shared some of your writings with friends.

I've had severe depression since I was quite young and I also have a condition causing chronic pain and I can tell you that much of what you're experience is pretty common, I think, whether or not one has a visible physical disability. I am so used to have health care providers dismiss my pain. And most health care providers pay little attention to my mental health even knowing I have a diagnosis of severe depression, even when they know I've required hospitalization for it and have attempted suicide before.

I hope it's OK if I share a couple things I've found to be helpful for me, which may or may not be useful to you.

Sometimes when I am in a lot of pain and/or very depressed, meal preparation is impossible for me. I rely on a lot of protein shakes at these times, which probably sounds pretty unappetizing but you can actually make some very tasty protein shakes with a blender, some frozen fruit, and some added ingredients like chocolate or caramel syrup. And they take only a couple minutes to prepare. It's possible to create something that looks and tastes a lot like an expensive Starbucks drink in a couple minutes that is also good for you.

I am pretty isolated as well, although physically I often have the ability to get out of the house (as long as it's not a really bad day pain-wise). Depression and anxiety make it hard to interact much with people out in the world, however. I use the internet for much of my social interaction. It's not the same as getting out and seeing people in person, but I do movie nights and all kinds of things with friends online. It helps a little.

Second Summit said...

I should have asked your permission before I did it, but I shared your post with my Facebook friends (not a jillion of them, honest).

One of my close FB friends is a home-care nurse, and she asked me to pass something along to you:

"please pass along these two words for his research: Prostat and Juven. That's all I can say lest I be practicing nursing without orders for a patient that isn't mine."

I don't know what that means or if it's useful, but here it is anyway.

Ben Cerwinske said...

I'm glad you're still writing William :-).