Don't Give Me Time

 Don't give me time to realize I don't need you. You won't win me back.

Years ago, as I was mourning the initial loss of leg function, then my brother, then essentially my world imploding, I lost a lot of people. At first I grasped onto them as I just couldn't lose anymore, but I was losing my footing in the storm. And then I just stopped fighting because I realized I was in the wrong battle.. I was fighting for others instead of myself. And in losing so much within 2 two years, I learned that the most important thing I had to hold onto was myself.

So I simply sat down and let the flood wash over me. I let everyone go. Some ran as fast as they could in the other direction, some quietly walked away. But the strongest of them stood at the edges and helped calm the flood; they were the ones that were there with a hand to help me up when I felt strong enough to fight again. They were the ones that cheered for me when I stood on my own, when I started over rather than try to rebuild what was. In coming years, as I saw some that left, blame was placed on me... why didn't I reach out when I was okay again? The answer was simple; I realized I didn't need you.

That lesson became essential. I used to chase after relationships, became upset when they weren't what I wanted or needed. Now, I realize it is what it is... we're guests in each other's lives and provide or receive something in particular with each relationship. It may or may not be equal, the benefits may be found years later, but we all serve a role.

I'm in that place again as I lose more function. People are walking away. Instead of grasping, I'm learning to fill the void they leave. What role did they play? How did they make things better and how can I do that for myself? What tools or lessons did they leave me? Or did they even make things better? Am I better off without them? Or somewhere in the middle.. do I need them as much as I think I do?

Now, I'm not saying constant contact is crucial (please don't!), but don't be surprised that we've both changed and the relationship is different. That's actually a sign of a healthy relationship... we're supposed to change and evolve. We're supposed to support each other in that, not hold each other back.

Forward Motion

A year ago, right after the Bay Area went on lockdown for "2 weeks", my stubborn came out strong and I decided to work on my walking. Pain management had gotten me to the point of walking to the bathroom by myself, but I'd get dizzy just walking across my bedroom. And I knew I couldn't progress like that.

One day, I just walked out of the house with my walker and headed to the corner. It was less than half a mile and I had to sit down a few times. That same distance went a little better a week later and I slowly progressed after that. My dad started to walk with me and that made me brave enough to go around the block, then two blocks. When I made it to a mile, I switched to my cane, but then my progress stopped. I watched how I was walking one day and realized while I was concentrating on keeping my foot from dragging, the rest of my leg was a problem.... my knee was overextending, my quads weren't helping, and my hip had gone back to swinging out instead of forward. Simply put, my control over my leg was worse than it's ever been. I got a big leg brace and put my AFO back on and progress returned.

In November, I made it to 2 miles, 2.5 miles in January. Today, while my car was getting serviced, I had time to try for a 5K. It wasn't pretty, but I made it back to my car in about the same amount of time that my fastest 10K took back when I was able to run. But I did iiiiiiit!!

My leg isn't any stronger, it's just more tolerant... and I have learned I can still just keep going, but I get dizzy of I stop. As always, forward motion is my advantage.

Representation Matters

 On this International Wheelchair Day, I'd like to share my past weekend with you. On Sunday, I helped coach an adaptive rowing introduction for those with spinal cord injury at Bair Island Aquatic Center, where I am a part of the adaptive program as an athlete, outreach, and coach. I was the only coach that uses a wheelchair. Two weeks ago, when I went to USRowing's coach training, I was the first coach that uses a wheelchair to participate in the training (definitely their current virtual training, I'm not sure about in person).

The other coaches and the volunteers found it interesting that I knew most of the participants at our event. While I did directly invite some of my friends and past teammates, I knew so many people simply because the adaptive sports community is rather small, especially women. I've had mostly male coaches, teammates/peers, and mentors. I've had one female coach, a few female mentors, and more teammates/peers mostly because I sought them out and some groups have formed, but the number is still low. 

Due to Covid, we had the event set up for 3 people at a time for each hour. After showing each group the boat and introducing them to the coaches, I assigned them to a coach and they were introduced to the erg (rowing machine) as this was an introduction to get people with spinal cord injury into rowing for exercise, recreation, or competition. And everything starts on land; with adaptive rowers having the added need to figure out seating and transferring.

I was assigned to roam.. pretty much so I could talk to everyone. Plus I'm still working on mentor hours for that coach training ;) I'm happy to say everyone had a great time. More importantly, everyone learned something and everyone taught something. 

Afterwards, I was talking to my coach about the event and she pointed out that it was SO important/amazing that I was there as a coach. She wasn't one of the first female rowers, but she knew those ladies.. and it was years before there were female coaches and refs; even now and in every sport, adaptive and able-bodied, it's rare to have a female coach or see a female official (I pointed out the Super Bowl announcers talking about the first female ref every time the camera was on her). We're doing a bit of the same in adaptive rowing right now. The USRowing coach training had a whole section on inclusion and diversity, and I ended up talking/teaching more than I intended just because I could give first hand experience.

Representation matters. There's a moment of joy when you see a coach that looks like you, and I was happy to provide that moment on Sunday, to have some suggestions or answers the other coaches may    not have had. I definitely prefer learning an adaptive sport from an adaptive coach, or at least knowing there's someone around to answer some questions that only another adaptive athlete can answer (luckily, I knew a couple awesome ladies in rowing before I got started). For the same reasons, I prefer learning from female coaches (the one I have is my favoriiiite!), or at least having female teammates. I know this doesn't seem like a big deal to a lot of people, but representation matters.

One Less

 

Whenever I go out in public, I inevitably get stared at. Mostly by adults... kids tend to ask the adult with them what's wrong with me or why I use whatever mobility aid I have for the day. I haven't been going out much in the last year due to my high risk status, so mostly just staring as I head into the chosen medical office of the day (the few people I see at rowing are used to me 😉). The other day, I realized I've been dreading the moment a kid asked their parent about me.

I realized it as a little girl behind me in line at the post office asked about me. Usually, parents hush their kids' questions fearing I'll be offended by a child's curiosity, their desire to understand the world around them. I'm something they've probably never seen and quieting the question makes me (and others who are disabled) something to fear, someone to stay away from. While I hope the parent explains later, I like to catch the kid's eye and smile at them; it's not much, but I hope the simple gesture shows them there's nothing to fear. And luckily, when I'm using my wheelchair, I'm more at their level than their parent's. Sadly, I can't do that with my mask on.

Anyway, on this particular day, I was using my cane and leg brace. The little girl asked her mom "what happened to her? Does she need help, can I help her?" (I was already at the counter, I think she saw me almost drop my cane) While my heart burst at how adorable that was, her mom answered her quietly, "it's nice of you to care, but it's not our place to know what happened to her. And I'm sure she'll ask if she needs help, just like you like to try things on your own before asking for help." In case you're wondering, that was a great answer. Care about other people, but don't pry into other people's business; point out our similarities while also encouraging autonomy. 

By simply acknowledging her question and pointing out how we're similar, she made that little girl one less person that will stare at me just for being out in public with a wheelchair or a cane. One less person that will think I'm amazing for going to the store on my own (seriously, adults have cheered for me). One less person that will run to hold a door for me, surprised that I'm already through by the time they get there. Most importantly, one more person that will see me as a person, not the wheelchair I use to get around or the cane I use to hold me up.

Yay for Supplements!

 

I just want to take a moment and thank my recent doctors for being so open to offering supplements. I don't know if this is a change in doctors or just from being in a healthcare system rather than being covered by regular insurance, but I think it's awesome.

I'm going to add a disclaimer before I go any further; this is definitely NOT a med shaming post. I take equal amounts of prescriptions and supplements. Take whatever combination is necessary for you to improve your quality of life. And that can only be decided by YOU and your DOCTOR. Not some random jackass on the internet that has the cojones to tell you how to live your life. And definitely not some "well meaning" friend or family member that "doesn't think you need that", without a medical degree or full knowledge of what you go through.

Give me a moment to climb down from my soapbox... and let me back up a bit..

Years ago, when I met my primary, I was surprised that she aimed straight for natural medicine and checking if I needed supplements. I actually thought it was a reaction to my resistance to taking my "as needed" meds. But then she told me she actually went to a class to learn more about supplements. And *gasp* wanted to try things like acupuncture and chiropractic to fix things or figure out what's wrong rather than just throwing meds at symptoms.

Then I met my pain management doctor last year. Admittedly, I had been afraid to go because I didn't want more and/or consistent pain meds. He ended up being overjoyed that I was overjoyed that he wanted to start with supplements. And he gave me a list of them to give me a better chance at finding one that worked for me so we didn't have to skip to nerve blocks (nerve pain meds have been horrible for me in the past). 

Most recently, my new GI doctor spoke a long time with me about my reinvigorated GI issues. She was happy I fully work on all the free treatments (exercise, diet changes, reduce stress...). She then gave me a supplement suggestion to try first, and a prescription to try if that didn't work. And we'll regroup in a couple months. So far, the supplement only causes one side effect I don't like, but it's definitely not bad enough to convince me to try the prescription. I usually get much worse side effects from meds.

The thing is my prescriptions are absolutely necessary to keep me alive and functioning. My supplements, however, allow my body a better opportunity to do what it's supposed to do, to work efficiently, to help repair some things to prevent needing more meds. This last year has been the first since I was 13 that I didn't constantly need anti-inflammatories and pain meds. Or, more accurately, I haven't had to fight with my doctors about how I shooooould be taking them, but don't want to, and living at a pain level of 7 is just fine! I live at level 4 now and will freely admit that living at 7 was stupid... I wouldn't change the choices I made, but I do wish someone had thought to send me to pain management much earlier.

So I Made One

Five years ago, I got frustrated while looking for a triathlon shirt. I was doing something new and awesome, and wanted everyone to know about it. Especially once I finished my first triathlon. The problem was every triathlon shirt did not depict what I had actually done because I used a hand cycle and a racing wheelchair. Paratriathlon. There weren't any shirts for that.

So I made one.

That turned into a bit of a crusade of adaptive sports... wheelchair basketball, wheelchair lacrosse, sitting volleyball, wheelchair tennis, para archery, para powerlifting, para rowing. They're available as shirts and decals in my various Team Tsunami shops.

I also ventured into cartoons, then fun wheelchair, cane, and chronic illness designs. I get messages from customers that are so happy they found my shop, that I made some shirts for their particular sport or that I have some fun with my chronic disorders.

My most popular design is the standard wheelchair icon with a mermaid tail; when a friend heard the basic treatment for dysautonomia (more salt and water), she decided that there's nothing wrong with us, we're just displaced mermaids. I loved it and decided the mermaid theory works for many disorders/disabilities and so my icon was born.

I even figured out how to make wheelchairs for my string doll keychains because I wanted one. And prosthetic legs because a friend asked for one for her daughter.

It's a hell of a moment when someone chases me down to ask where I found my shirt, or my keychain, or the fun sticker, or the fabric for the cover on my wheelchair (yes, I've designed some fabric too!). It makes me so happy that they're excited to have found it, but sad that it's so uncommon that it seems like a freakin miracle that they found it. Other crafters and designers sometimes ask how I found my niche... the honest answer is it found me. I discovered there just wasn't much there. So I made more.

 

My Superpower

 One of my greatest assets is my ability to just keep pushing. Physically and mentally.. it's a great way to reach goals, but I have to be careful not to drive myself into the ground. Every superpower has its downside.

I thought I had lost the ability; not entirely, my stubborn still drives me when I need it, but that usual push has felt out of my reach. I thought it was coming back with my push to walk again, to get my endurance back. A conversation with a friend made me realize it's always been there.

It's been there every morning as I force myself out of bed. Every time I stand up, knowing I'll stumble around with my cane and/or get dizzy for standing too long. Whenever I exercise, go rowing, head out for an adventure on my bike, go for a walk. Every day, tracking my food to make sure I eat enough. It's with me at every doctor appointment, pushing for evaluation and treatment.

I've spent the last eight years trying to convince others that my independence isn't anything special, that taking care of myself isn't heroic. And I stand by that, but that soapbox blinded me to the strength it takes me to get through each day. That ability to keep pushing switched from goals like marathons to surviving each day.. I'm finally seeing that I'm just pushing through a different kind of marathon. On good days, I can see the push and I can feel it as I'm able to do more. On bad days, I now need to recognize that it's still there, just in a different way.