Day 8: Dear M.E.

Day 8 – Thursday, Nov. 8
Write about how you choose to write about others in your blog. (Friends, family, etc)
OR
Write a letter to your health

Dear M.E.,

You've given me a lot of things. You've given me pain and fatigue and brain fog. Insomnia, tinnitus, a walker, a wheelchair. Allodynia, oversensitivity to noises, and loads and loads of quality time with my bed. I've accepted these things from you because I don't have a choice. But there are some things I won't take from you.

Let's start with bitterness. It's something you offer to all of your patients, isn't it? "Look here. Look at what you've lost. The hiking trails in the mountains. Your dream of travelling the world. Machu Picchu? Ha! You can't even walk to the corner shop. Your career? Forget it. Do you remember what it's like to wake up without pain? With a clear mind? With enthusiasm about the day? If you still do, you won't for much longer, because I eat at your mind too. Remember when you were 'the smart one' growing up? You don't feel that way anymore, do you? I've taken all that from you. Isn't it unfair? Aren't you bitter?"

No. I'm not. You can keep the bitterness. I know where that road leads, and I'm not going to walk down it. It's an easy path - ever so tempting - but no. Keep your bitterness. I do not want it. I will not have it.

There is fear. This one is harder to avoid. I am human, and humans fear. I fear the darkened room where the most severe M.E. patients lie in a bed that they never leave. Catheters, I.V. tubes, hushed voices. Limited interaction with the world. I fear that room is in my future, and you have given me that fear. But I don't have to keep it. The room is there or it is not there, and fearing it today will not make it more or less dreadful should it occur. 

I will look at my fear. I will remind myself that the future could hold anything, and I will reach it at a pace of 60 minutes per hour. And I will let it go. I do not want that from you.

You offer loneliness. For a woman whose life is lived from a bed, you make it difficult to refuse. I leave the house so rarely. Once a month, a doctor's appointment. Once a season, perhaps, an outing of pleasure. We went to an art exhibit a few months back. We're hoping next month to go out to see a movie. These outings require excessive planning, research, and effort, and sometimes have to be frequently rescheduled before they occur. I can spend weeks seeing no one but my husband. And even when I go out in the world, I feel like a stranger there, in my wheelchair, being pushed through the world of the healthy.

But to counter loneliness, I have love, and I have the technology to carry that love from around the world to the laptop I can cradle in bed. And even if the future of the darkened room happens, and I can no longer use a computer, I will still have the love. You can't take that from me. And so I am often alone, but I am not lonely.

Worst of all, you try to give me guilt. "You don't really pull your fair share, do you?" "If you were healthy, you could've..." "If you weren't so sick, he wouldn't have to..." "If you just tried harder, you could..." This is the worst gift, because you try to make me feel guilty for things that you've done to me. Victim blaming. And it's the most effective, because so much of society joins in with your voice. They want it to be my fault somehow - perhaps I'm refusing to get well, or I didn't eat the right foods, or I let mental illness get the best of me. If this is a world in which people can just fall ill one day and never get better, then it is a world in which it could happen to themselves, or their loved ones. That is a frightening world, and it is much more comforting if I am to blame. It is also more convenient for society, because if I am to blame, then no one need feel responsible for trying to help. No need to put research money to discovering a cure, or social care resources towards helping me get through my daily life. And so the news talks about benefits scroungers and frauds, and insists that M.E. is all in my head. (As if I haven't had mental illness before and beat it. I wish you were only in my head. I'd kick your ass if you were!)

I do not want your guilt. I am not to blame for my disease. I find more guilt inside me every day, but I'm getting better at unloading it and sending it back to you. My husband does not resent caring for me. I did not do anything to deserve getting sick. Even if some of society resents caring for the disabled, some do not. 

I will take the pain. I will take the bone-crushing fatigue. I will take the losses you've inflicted on me. 

But I will not accept suffering from you, because I do not suffer. I am not bitter. I am not lonely. I will not fear. I will not feel guilt. These gifts I return to you, unwrapped and unwanted. I have a life that I live from a bed, and that life is precious to me. You can leech off of it, but you cannot poison it. I will not let you.

Your patient,
Happy

#NHBPM