This evening I took a walk with my husband Chuck in my new wheelchair. I was surprised how emotional I was, moving from a scooter and walker to my wheelchair. It felt like another cog turning in the timing of my life. I have an actual wheelchair, signaling a progression in my disease. At the same time that same chair offers me amazing freedom to be out in the world. Maybe even a trip to Dick Blick, my favorite art store.
I had decided that as I first rode in it I would create some other diversion, so instead of people saying, hey she’s in a wheelchair they would say wow, look at that huge sombrero. I decide on some multicolored streaks in my hair to draw the attention instead of the sombrero. Actually, no one has said anything, they just smile, I am sure they are noticing my hair, not the pink wheelchair.
Oh yes, did I mention I have ended up with a pink wheelchair? I could not decide on a color, but my granddaughter saw the pink one and the next thing I know they have delivered a stunning pink chair. I still can switch it for red, but the pink is growing on me.
As I start writing about moving into a wheelchair I am guessing you have guessed that I did not get that pesky bubble gum out of my ear, which is always my hope. All my symptoms disappear as the pink blob is removed, so that’s where I put it! It was not MSA after all!
I have however, finally reached a really mad and smart ass stage of my disease. In one day I fired and rehired my neurologist, and then for sure fired my neuropsychiatrist. A bad appointment with the neurologist ended with her scheduling more tests and then making an off the cuff comment remark that maybe I did not have MSA after all. I cried. She was surprised I would not be overjoyed by this news, which did nothing to change any of the horrible symptoms I am having.
My second appointment of the day was with the neuropsychiatrist. This is the doctor who looks at the many and varied medications all my other doctors have prescribed and figures out if I am going to explode from the mix. I should point out that these were back to back appointments; I left the neurologists office in tears to enter the den of a psychiatrist.
She read my chart, notes my tears and we talk briefly about feeling upset with my appointment with the neurologist. By the way one of the symptoms of MSA, which at this point my doctor swears she never said I did not have, is emotional incontinence, I tend to have waves of huge emotions, but who wouldn’t?
So the neuropsychiatrist looks at me and says, Do you have a plan to kill yourself?
Let’s see, I have an illness that will continue to progress until I can’t move or talk but will have a perfectly fine brain, chugging along. I have discussed the death with dignity option, which is legal in my state, with all my doctors, mental health therapist and my entire family. And I have a clear contract that I would include everyone in the decision process. So I answer yes.
Do you have an actual plan set in place?
This is not a decision I take lightly, I would need to have already talked to my doctors and gotten a prescription before it is time, so of course I do.
What method would you use?
Pills, of course. Surrounded by my loved ones, I will go peacefully to sleep and into the arms of the Beloved.
Do you have these pills?
Probably not the actual ones, but if I needed to, I could come up with a mixture that would do the job. But let’s be clear, I am not planning to do this anytime soon.
It is not healthy to go around planning your death; I think you should be hospitalized.
I realized at that moment that she did not want to know my logical plan, and probably with good reason, she thought she was speaking to a teary wacko ready to jump out the window at any moment. She did not know me.
I am crushed. A few days, she says, just to make sure you are safe. I will call down to the ER and they will admit you from there. So here is this doctor with years of medical training and experience is telling me I need a few days in the hospital. What to do?
Chuck and I headed to the ER, somewhere in my mind I was just giving in. Maybe I am really suicidal, I don’t feel suicidal. But the doctor says she thinks I am, and she said just a couple days.
So in we go. If you have ever had this experience and really did need hospitalization, God bless you. But I did not. That thought came to me sometime between me having to relinquish all my clothing, being placed in a “special” gown, so garish in color that any escape attempt could easily be seen from the moon. Then a 20 something social worker with a clip board of questions entered leaving the exam room door open so the guard stationed outside my room could keep an eye on me. Then the social worker explains I would be in the hospital for at least a week.
It took me four long hours to talk my way out of there. Thank goodness that my therapist answered her phone, vouching for my mental stability, tendency to speak in a straight forward manner and my horrible morgue humor.
When I got my new pink wheelchair was described as having 4 speeds, the highest to be used only when needing to quickly cross a street. I found there is a 5th speed, and used it.
Anger Assisted in Break Through
I use a technique called Mind Mapping. It is a kind of real life puzzle that can be solved, only through the experience itself. I started with circles representing what was true for me.
“Love of Family” “My Spiritual Community”, “Writing and art” and “My Health Plan”. Then from those main circles I began to connect up the things I am already doing, or want to change about my life, like not speaking so bluntly to a doctor ready to hospitalize me.
I write: I spend quality time with my family. And I am willing to accept the love and support of my spiritual community.
I spend time every day in prayer and meditation, aligning myself with the Divine Healing that flows through me right now.
Under “Health Plan” I write: lie to all my doctors. No, that is not what I want, so I cross that out and write:
I create clear communication with my doctors. I am in charge of my health team. I make the final decisions in my care.
Then I remember that what I really want to do is see a local naturopath who does vitamin I.V’s. I have had them before and it was the best I ever felt. But alas, I quit because it is just so expensive. So I connect my writing and art circle to my health plan:
I create and sell my artwork and book to abundantly support my health.
So today I had my first injection, not a full IV yet, maybe next week, but my Master Mind is in action and life is good and very pink!
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