No matter my age, when things get rough, I want my mom. When I was first diagnosed with MS, I lived in Chicago and my mom in Cleveland. I remember calling her first and saying, “I’m at the eye doctor and they think I have MS and I’m walking over to the ED to be admitted to the hospital.” I also remember not wanting to make a big deal about it but secretly hoping she would come. Spoiler alert: she did. My mom hopped on a plane and flew to be with me in the hospital. She also ensured I got home safely when I was discharged. I remember her doing laundry, changing my sheets, stocking my fridge with food and doing actionable, helpful things.
That’s who my mom is – she is a doer. I frequently tell her that she doesn’t rest well. But when times are tough, she’s there… usually with food and always taking care of things without being asked.
I’m fairly biased, but my mom is the best. We’ve had our ups and downs navigating my diagnosis, life with chronic illness and how to communicate effectively, and now HSCT but I’m so lucky, so in love and so grateful for her support. I also know this is really really hard for her too. I asked her to write about her thoughts and feelings for other moms and caregivers.
Meet my wonderful mom, April…
The first difficulty of being a mom of someone with a chronic illness for me, was remembering that I am not the one who is ill. As we seek much needed support for ourselves, sometimes it’s hard to remember that it’s not about you. I remind myself to keep the focus on Carolyn and on what is happening to her.
Reflections on coping
Talking about something of such critical importance – like Carolyn’s MS progression or her HSCT journey — was a learning curve for us both. As our daughter’s mobility changed, I tried and sometimes failed to hide my distress which made it hard for her to want to share. It can be a vicious cycle in the parent/child relationship of not wanting to upset the other person. But chronic illness is hard and some of her updates were, and are, upsetting. But as the mom, my feelings are valid too. In hindsight we were all very busy trying not to over-react in front of each other.
Technology can help
One of the best things we did was download an app called Marco Polo that a long-distance friend of Carolyn’s told her about. I can’t recommend this app enough for open communication. Marco Polo is a simple one-sided video chat that is sent to another individual. While not a substitute for in-person connection, what started out as a fun video chat during the pandemic became a life-line for hard updates. Carolyn could tell us anything. I could listen to her videos in private when I was ready to hear them as well as think and formulate a response after I was able to digest the information. It gave us the time to formulate an answer thoughtfully without the pressure of an immediate response.
Information is power
I signed up for the MS newsletter when Carolyn was first diagnosed nine years ago to stay informed on research and current topics. I admit I don’t read it cover-to-cover, but it provides articles and video conferences on a plethora of topics. Before the pandemic, my husband and I attended an MS education workshop offered in the Cleveland area. It was a good thing to do at the beginning to immerse ourselves in the world and the community, chatting with other individuals who have MS as well as their parents and caregivers.
Support is available
I am a huge fan of the MS Foundation. The foundation helps all MS patients afford their medication. Not everyone has the insurance coverage or access that Carolyn does working for Cleveland Clinic. It’s amazing to see organizations working to improve access to life-altering medications for everyone.
HSCT and where I am now
The first time I was with Carolyn at the hospital I was woefully unprepared. This was the week following her first dose of chemo when she was headed to Taussig Cancer Center at Cleveland Clinic daily to check her blood levels and receive supportive care such as fluids or potassium. I walked to the food court to get us some lunch which was no big deal that first day. By the second day however, I was much better prepared with a variety of snacks to offer Carolyn depending on her nausea and what sounded good. The individually wrapped sharp cheddar cheese was a huge hit! Sometimes, having a little something was better than running for lunch. Full disclosure, I ate most of the chocolate.
Write it down
As a mom I want to be there for my daughter but I also want to be able to report back to my husband and other family members on how Carolyn is and any critical updates from her medical team. Pro tip: carry a small notepad and pen. I know I won’t remember everything so I want to write things down. The health care professionals say such wonderful, informative bits of wisdom and you won’t remember everything you want to remember during a five-hour session.
The other thing to note is that Carolyn has many specialists coordinating during this process so what we hear from her neurological and MS team differs from the information from her oncology team. Yes they are working together, but they are focusing on different puzzle pieces of the HSCT process and I want to try as best as I can to follow along and keep up.
This means chill out and relax. Chronic illness is the best proof that we are not always in control. Don’t try and do everything all at once. Communicate with friends and family when you have the time. Prepare a meal or use take-out. Let people help you too.
“I’m fine” is a terrible answer to give when someone offers help. And some people will offer assistance but look to you for tangible ways to help, so know what you need and tell them – be specific.
I belong to a wonderful play-reading group. I told the group that I would pretty much be living in a closet for the next two months to minimize my exposure to COVID; trying to keep myself healthy so I wouldn’t attend our meetings. Several of them immediately replied, “We can deliver snacks to a closet.” Be ok with accepting help.
The importance of self-care
I will be absolutely no good to Carolyn, or anyone else in my family, if I get sick. I try to get six to eight hours of sleep. I try to eat healthy foods and I keep my own doctors’ appointments as scheduled. It isn’t much, but it’s important that we feel we have control over some things, for small victories.