Before everything went to hell, it was not uncommon for me to practice piano and voice 3 or more hours a day. Sometimes, it would be more like 7 or 8, or until it felt like my fingers were literally falling off, which I now know, technically they were (thank you EDS). I would just get so lost in the feeling, the joy, the experience, and I especially loved the feeling of learning a new piece and then, after much practice, nearly perfecting it. In fact, I would get a sense of sadness upon realizing that I was now proficient in a piece, to be replaced with the enjoyment of knowing that I have many, many music books, with things that I had either not worked on before, or had not worked on in a very long time. I wish that I was able to express in words just HOW much music means to me. I almost feel like English is my second language, and a major scale is my first. These little squiggles on the paper, to one who is unused to reading it, can seem meaningless, but to me it is at least as beautiful as any work of art by Michaelangelo or painting by Monet. I eat, sleep, and breathe music.
This summer has nearly killed me, it seems. There have been, so far, more than 50 days with highs of 90F/32C or more, with indexes reaching 105/42. The heat, and especially the HUMIDITY, has been just horrible. It contributes to fatigue, and since I'm so tired, I haven't been tensing my muscles around my joints nearly as much so they're more prone to dislocate, especially when I am so unsteady on my feet, again, because of the exhaustion. I have barely been able to function enough to ensure I get a shower at least a couple times a week, much less practice. If I've been able to get more than 30 minutes a day of practice, it's been a bloody miracle. It's also killed me inside, a little more every single day, piece by piece being hacked off by my cruel masters of EDS and POTS.
"Today, you cannot stand up to sing. I won't allow you!" Of course, being the stubborn lass I am, I will try (although not as often as I once did), but I am reminded very quickly who is in control, and it isn't me. "Today, you can play organ for 2 hours (used to play over 4 at a time), but you will constantly know I am in charge by how often you'll have to reduce a dislocation." On Tuesday, I did play organ, and I was so happy that I only had to take care of a joint 15 times. I WAS EXCITED I ONLY DISLOCATED SOMETHING LESS THAN EVERY 10 MINUTES. I miss the days, before that !@#$(*% knee surgery in November of 2009, that the state of my wrists and fingers weren't constantly in the back of my mind, and I could completely lose myself in the music. I hate that it is such an anxiety ridden time for me. Music used to be my refuge from that anxiety. Continuing to play it has become one of the biggest sources of it.
What's strange is just how much I don't care about everything else I've had to give up because of this. I don't care that I can't work. Although I worked at Starbucks at one point in time since I couldn't afford my habit [baristas get free drinks during their shifts], I don't care I can't have more than a sip of coffee without my heart feeling like it's trying to be the newest member of Stomp. I don't even care so much about those "friends" who cannot handle me being sick jumping ship. I know how overwhelming it can be to see a constant reminder of one's own mortality, and unfortunately the past 70 or so years in "westernized" cultures, death is to be avoided at all costs, including talking about it. I break that folkway on a somewhat regular basis. Death does not scare me, because I know there are things much, much worse than that.
I have had a regular wish these past few months that I had never started piano lessons (that's where it all started) so, so long ago, especially with knowing what I know now. This pain of seeing it being taken away, piece by piece, bit by bit, and knowing that there is not a damned thing that I can do about it... indescribable, just fecking indescribable. However, I am not so certain that I would have survived some very unpleasant events in my life without it. And, yes, if I had never started, I would be avoiding this great pain right now. I would have also missed out so much on everything else that music has given me, including indescribable joys and peace. And, I hope I can mean that if I had to stop playing forever tomorrow, it still would be worth it. I just don't know. I wouldn't quite call myself depressed right now, but I also wouldn't call myself a bundle of joy right now either, would I? This whole business of grieving is just so difficult, complicated, and confusing. I hope I make it out intact.
5 comments:
Hi Rickie. Your post is so honest. So much of what you say on many levels will ring true to those with chronic conditions.
I was no expert but I am told I had considerable talent in both the clarinet & piano. Neither of which I am able to play now. How weird that earlier on tonight I was thinking about playing the piano. Thinking that as one son is at some point in the future off travelling, daughter soon again to go off to uni, sitting in the kitchen mulling things over I got the idea that I should get a piano again! I understand your grieving.
This is going to sound really crass but I shall write it anyhow because its a small thing that has helped me, crass as it is I suppose sometimes, things are trite but true? On an extended pain management course I was taught to find pleasure in smaller things. Having talked of how I missed a beautiful rural walk. Now I sit on an old bench breathing in the air, watching the wildlife, seeing the things I used to miss. It sounds silly I know and it doesn't change a thing about losing mobility etc. but it does really help. The stillness has given me the opportunity to see that which I otherwise would not have seen.
At the minute I am awake in the middle of the night when I should be asleep. Its my fault, in great pain earlier I took a combination of medications which have left me unable to sleep. My guess in others they would probably put them to sleep for 24 hours in me I am in the wide awake club. Another anomaly of the EDS strange reactions to meds. Such fun eh! This means tomorrow I will be a waste of space. Looking on the bright side, if I hadn't have done this I wouldn't have read your post!
Could you teach music, you may already do so please forgive me as I have only just stumbled upon your blog. So now I can look forward to reading your journey with eds etc. you see it really helps me to feel less isolated reading blogs & getting to know others with the condition albeit virtually. I have written this before but sometimes having a rare condition is pants frankly. I would not wish MS on anyone but I sometimes wonder if I said to people I had that condition their reaction would be different rather than the reaction one gets to ours! You know the blank look, the name doesn't help does it.
For some with POTS caffeine helps - me raging palpitations and those white outs that have me fumbling for furniture before either vomiting or passing out, gracefully obviously. he he. Salt helps though.
I am off finally! With this thought. I wonder if you push yourself too hard, crashing because you have high expectations of yourself. I am good at saying this but not so good at putting it into practice myself. But sometimes pacing & achievable goals can help with the feelings of chasing ones tail.
I hope tomorrow is a better day. You don't sound depressed more justifiably angry.
Take care & please accept a gentle virtual hug.
I've had to come to accept that doing a blog about my health issues means that I'm not going to update very much. It's been a few rough days, and I'm only now feeling well enough to respond.
As fas as you being crass, I don't get that at all. While temper tantrums are great occasionally, I don't like staying there, and I'm always grateful for people who care enough to take the effort to keep me from staying in such a state, so thank you. These past few days, I have made a bigger effort to, when I can, notice and appreciate the small things around me. Not been entirely successful, but even the effort has been helpful in dealing with this anger.
I don't teach music officially, but I have a few friends who want to learn how to read music notation, and I am teaching them. I am unsure if I would have the energy to have an official job, at least one that would require me to say ahead of time that I could come in and teach, but perhaps in the near future, after I learn how to deal even better with my symptoms, and I can be more consistent with attendance.
Speaking of MS, I have been asked if I have in out in public. Apparently walking while trying to prevent hips from subluxing is very similar to the walk of MS. Like you, I have been tempted to say that I have a more known condition, because, while I do as a general rule like to educate people about these illnesses, it becomes somewhat tiring and I've been tempted to carry around small business card-sized cards with enough information for the other person, plus it would be great to have if I should happen to have an ambulance called or go to the ER.
I also understand the strange medicine reactions. I was put on dyphenhydramine as a sleep med, but it never worked so great for me. In fact, most sleep meds only make me tired but very hyper, too, like my sympathetic nervous system is being very agitated. However, pseudoephedrine puts me to sleep. Caffeine causes severe tachycardia, but nicotine calms it down (yes I know I should quit smoking). I really agree with the salt, though! In this day where everyone is cutting salt everywhere, I get strange looks when I'm putting at least 2-3 salt packets on my food at lunch... even stranger looks when I just eat a salt packet (which means I've sweat WAY too long). Oh well, c'est la vie!
In some ways, I am glad these things have caused me to have to become still and just be. I have always craved the silence, but I've come to depend on it as of late.
Virtual hug accepted and returned! Again, thank you for the encouragement, and I hope you have a wonderful day!
I feel your pain, I have POTS and EDS and suffer terribly with heat intolerance. I even need a/c during winter.
So glad to have found your blog. My 21 year old daughter has POTS/Dysautonomia. Each day brings a host of challenges.
Thanks for sharing your journey.
Mary
How are you?
Kind Regards
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