I’ve been avoiding you.
To be more accurate, I’ve been avoiding me too. I’ve been trying to pretend I’m OK and hoping that it will eventually stick and them I’d come back here to my writing and impress you with my resilience and fortitude. The thing is, that’s just not happening and I have all of these words kicking around in my head where they can do no good and lots of harm. When I don’t allow the words to come out, they chew on my insides like the razor-sharp teeth of a family of piranhas. My insides start to feel shredded and thin. My outside starts to leak from my eyes more often than I prefer. In short, it’s all kind of a mess when I try to avoid you. And me. It’s not good.
Five weeks in the hospital leaves you feeling like you’re not quite fit for the outside world. Everything feels scary and strange. The quiet that used to soothe you feels like it’s screaming at you that nothing is right and everything is wrong. Your safe space is no longer safe. You feel vulnerable. Like an interloper intruding on the real world. It’s unnerving.
I’ve had to rearrange my entire house to allow me access to food and water because the doorway to my kitchen is too small to comfortably accommodate my new manual wheelchair. I’m still using the loaner chair, to be clear, my official wheelchair hasn’t been delivered yet but it’s probably about the same size so things had to change. My refrigerator is in my dining room long with my water cooler and microwave. There’s a portable toilet where the fridge used to be because…well. Because sometimes I need to pee quickly and I can’t always rely on my legs to get me to the upstairs bathroom fast enough. There’s also a portable toilet in my bedroom for those nights when my legs aren’t feeling the short walk to the bathroom. I’m rich in receptacles in which to pee. It hardly matters that they don’t really belong where they are. My mom used to refer to these handy items as the potty chairs. You can imagine how well that went over with me so my sister and I decided to refer to them as The Bedside. It feels more dignified somehow. In the hospital they refer to these devices as bedside commodes but come on. Commode? That’s almost worse than potty chair. Multiple Bedsides are a part of my life right now and that’s just the way it’s gonna be.
I can’t deny that I’ve gotten a bit stronger since I’ve been home but I’m also cautious about that declaration because I’ve been put on a low-dose steroid treatment because my neck pain came back causing my spasticity to flare again. I learned the first time around that it makes zero sense to monkey with my baclofen pump settings when this happens because it will have no effect on how I move until we get the neck inflammation under control. So steroids it is until I get to my appointment with the pain management doctor on September 3. Franzi thinks I’m going to need a series of epidural steroid injections to get this neck situation controlled once and for all. Ironically, I’ll be seeing Dr. Kapazie, the doctor who jerked me around while in the hospital making me wait over two weeks before I finally got the injection I needed. I liked him in spite of myself. I didn’t want to. But there you have it. I can’t stop obsessing about the fact that my steroids run out before September 3 and what will happen in those few days to a week when I’m in the in between. But that’s just par for the course – the obsessing I mean. I have a serious obsession problem.
I’m obsessing about how I’m starting all over again after doing months of hard work coming back after my first surgery and 4-week inpatient rehab stay. I’m obsessing about not being able to leave my house. I’m obsessing about how weak I feel and how I can only walk the very fewest of steps. I’m obsessing about how my first shower with my OT Lauren was borderline deadly. I’m obsessing about the fact that it’s been nearly a year since I’ve been able to drive my car. It’s not even in my driveway anymore because my nephew has been driving it in order to get some actual miles on the car so I’m not totally wasting my lease. I miss driving so much it actually hurts me.
I’m struggling with the fact that I’m fighting a physical battle that’s really difficult but the mental battle is where things really get real super-fast. Mentally speaking, my brain is on fire. It reels and roils and never seems to stop. My thoughts are a constant scribble of doodles that overlap each other creating more confusion than sense. I obsess about what I can’t do. I obsess over remembering who I was and thinking I can ever be that person again. I need to embrace this new version of me with open arms and remember how fortunate I am.
Why is this so hard for me?
I’ve done this before. I’ve been thrown major curve balls before. I know it takes time. I know nothing and nobody can make the process go any faster. I just don’t think I was prepared for this process to happen twice within the span of a year. I assumed forward motion. A reliable curve. The very idea that I allowed myself to believe that is preposterous. MS does not follow a reliable curve. MS is not about standard forward motion. MS is pretty much defined by chaos – at least mine has been – and the thing I obsess most about is how could I have forgotten that fact?
Living in the present is the key to my happiness but my mind slips into the past almost every other minute.
I try to focus on how many things I can do today that I couldn’t do yesterday but I get distracted by the feeling of the walls of my rather inaccessible, mish-mashed home closing in on me. The heat and humidity that has come with this summer only adds to my sense of oppression. Even if I could go outside, I wouldn’t. My body does not like this kind of intense heat and humidity. I’m better off inside but knowing that doesn’t ease my mind.
I used to have a partner in this mental battle but my precious therapist Cheryl retired and we’ve struggled to stay in touch. I honestly don’t know how any human gets through life without therapy. Now that I’m giving it a go, I do not think it’s a wise choice. My mind is too dark and twisty and full of little caves where scary things live for me to be trusted with managing it all on my own. I am about to begin the search for a new therapist but I have to tell you, the mere idea of managing that process overwhelms me. Finding Cheryl twenty years ago was a process. She was my fifth or sixth shot at finding the one. Now my problems feel so much bigger and complicated, the idea that I will stumble upon a new therapist who can help me through this mess seems impossible.
Everything feels impossible when you try to simultaneously look forward and back while also staying positive in the present.
I’m starting back to work on Monday August 17 and I can only hope giving my brain something to think about that isn’t my MS might be a good thing. Books don’t distract me. Television is a little better but not much. Every morning I wake up with the distinct feeling that I’ve lived this very same day before just 24 hours ago. Round two of my come back is pushing me to my limits. Maybe remembering that I used to use my brain for things other than feeling overwhelmed and sad will be a step in the right direction.
A fellow MS’er and friend posted something on Instagram today that hit me right in the feels. It said:
“We waste our energy and exhaust ourselves with the insistence that life be otherwise.” – Frank Ostaseski
Well then. That’s certainly a bit on the nose for me right now isn’t it? (By the by, you should check out Damian Washington’s YouTube channel for awesome content and follow him on Insta @damianwashington).
The amount of energy I’ve expended in the last six weeks doing just this – insisting that my life be otherwise – is immeasurable. It started in the hospital. It continued when I made my way home. There are small glimpses of acceptance happening here and there, such as embracing the use of not one but two wheelchairs in my life and beginning the process of finding a better, more accessible living situation for me. But when the first house I found fell through for too many reasons to list here, it sent me down a dark rabbit hole where I struggle to figure out how to embrace a new way of life within the limitations of my old life that is forever gone. This house that sheltered me and gave me joy suddenly feels like a prison. I try to remember to soak in it! To love it for as long as I can because when I am forced to leave it, my heart will surely break a little. Then I find myself going to the bathroom in my kitchen and that whole idea flies out the windows of my muddled brain.
I’m going to work harder on being grateful when my eyes open in the morning. It sounds so basic. And yet I have that moment each morning. That moment when I wonder why I’m even bothering. The moment when the new day feels exactly as empty as the day before. Something gets me up though. Something inside of me that refuses to give in no matter how overwhelming the urge is to just refuse to move. Today it was a visit from my physical therapist Aaron. Yesterday it was a visit from my OT Lauren. Sometimes I wonder if they realize how big a role they play in my life – a role well beyond their actual jobs of getting me stronger again without aggravating my neck injury. They are my hope. Over the weekend it was spending time with my friend Jennifer and my mom. Jennifer changed the sheets on my bed and it was like a gift from heaven. I need to find a way for the tiniest of things to be enough. That is my quest now mostly because that’s what I have left. I have to remember how big those little things actually are. This is a process. A practice. A life-long pursuit that will never change.
I want to blame this on MS. But the truth is, we’re all in this boat – chronic illness folks and normals alike. It’s just so much easier to ignore when your body isn’t rebelling against you on the regular. I know this. I used to be a pro.
Before I go I need to thank every one of you for your words of encouragement, wisdom, distractions and comments as I went through my stint at inpatient rehab. I usually try really hard to respond to every comment because that’s how important they are to me. I just didn’t have it in me this time and I hated that. But please know that you helped me get to the other side of this latest 5 week detour and I can never thank you enough. This community saves me on the regular and I am so grateful you are here with me. I will try not to avoid you in the future.
Doreen M Espinosa
August 11, 2020 7:11 pmBethy, You are so much stronger than you let on. Everyday, everyway you take on the world. It’s impossible to always look forward. If we don’t remember where we came from, we don’t appreciate where we are or where we are going. I just want you to know, we all have battles. Some are visible, some are not. I lost my counselor 5 years ago to retirement also. I still haven’t found someone I trust as much as Jean. I don’t think I ever will and I could sure use one now. It’s in moments like these that I know we all need a “Jean”. Don’t give up on finding someone, the sooner the better. The longer you wait, the fussier you will get. I can only imagine how going back to work will take your mind into different places. You won’t have time to think of bedsides. You’ll be looking forward to breaks and lunch time. Just remember to keep moving forward. You’ve put way too much into this to go in any other direction now. You go girl!!!
Bethy
August 11, 2020 7:13 pmThanks for this Doreen. I need the reminders. And I am going to focus hard on finding a new Cheryl. I know better than to think I can go this alone. Sending you love! ♥️
Tracey bovan
August 11, 2020 10:14 pmBethy. Don’t you realise that you save us?
Bethy
August 12, 2020 8:34 amThe idea that I can save anyone in this condition kind of blows my mind. Thank you for this. ♥️
Diane from Alabama
August 11, 2020 10:54 pmOh Beth, this post made cry for how hard this is and how broken you feel. Know that you are regularly in my thoughts & prayers. Sending a distance hug (although a real one would probably hurt Ike crap!)
Bethy
August 12, 2020 8:35 amI’m lucky to have you sending all of the good stuff my way. I’m going to be ok. I mean, that’s what I keep telling myself anyway. 😉
Ruth
August 12, 2020 12:21 amThank you. I also needed to read this. For different reasons I wont bore you with but I also need to stop looking back at what was
Bethy
August 12, 2020 8:36 amIt’s such a hard thing to do! I wish there was a magic wand we could wave to make this tendency go away. Sending you ♥️ and strength.
mia
August 12, 2020 2:55 amLove you bethyyyyyyyyyyyyyyy <3 <3 <3
Bethy
August 12, 2020 8:36 amLove you so much back my Miapieeeeeeee♥️♥️♥️
Andy, wasting his energy and exhausting himself
August 14, 2020 4:05 amFirst of all, I hope Jennifer’s mom put the sheets on just the way you require (God bless her), because I know how important that is to you. That quote really struck me right now, as I am trying to stay awake on the night shift, trying not to obsess over our union vote which will be counted today (as I am trying to sleep – oh, melatonin, please work your magic today). I’ve been risking my job (career?) the last few weeks forcefully agitating for the RNs to unionize here so that we can have a voice in hospital decisions. What happened to you in having to unnecessarily wait for a necessary treatment was the kind of greedy BS that I and my fellow malcontents are trying to eliminate here. I can’t say any more about this in a public forum, but we can discuss it over email if you like. My mind has been racing for days/weeks over this. If the vote fails, I am dead man walking and will not be long for this hospital. Administrators have long memories when it comes to subordinates calling them out to their faces. Anyway, I’m rambling. This is my way of saying that I feel your frustration. However, your fight is not one that can be given up on. Neither is mine. You will prevail over your condition because you are that kind of asshole (so am I). MS can go to hell. You are stronger that it is. You have the spark of genius in you. It is a rare quality, and people such as yourself are treasures. Hang in there Bethy!
Bethy
August 14, 2020 8:40 pmOk. First of all I’m gonna need to know much more about how this all turned out. Email me immediately!! They’d be fools to lose you. I’m not sure how I got so lucky to meet so many awesome people while in the damn hospital but you were a highlight and I need to know what comes next. Jennifer knows how to do hospital corners. Her father taught her as a child. Why else do you think I let her near my bed??? EMAIL ME. STAT. 😳