“Be strong enough to face the world each day.
Be weak enough to know you cannot do everything alone.” – Author Unknown
It’s so much EASIER when you share an arduous journey with others who are in your boat. I’ve often written about the whole “misery loves company” saying. What does it mean exactly? I don’t think it means we want people to share in our misery as much as we find others in the same boat, and not being alone is what brings us some comfort.
The minute Dave and I arrived in Little Rock all those years ago and surrounded by hundreds of other Myeloma patients milling around UAMS. In the waiting areas of all the same clinics and the infusion waiting area. Every day was like being in a support group. It was uplifting and encouraging. I’ll never forget sitting in the MIRT waiting area very early on. Dave was in a lot of pain with his back and scared about all that was coming. A woman looked across at us, another patient. She quietly leaned over and said, “Have you been newly diagnosed, and this is your first time here?” We said, “Yes.” She then reached and gently touched my husband’s knee and looked him dead in the eye. “You are in the best place possible. You’ll be just fine. Trust me.” We, and others, had excellent daily interactions. We were talking to each other about where they were from. When were they diagnosed? How did they find their myeloma? Where were they in their treatment? Who was their doctor?
Often we would pair off, and the patient would talk to me about their caregiver and all they were worried about with them. The other partner would be chatting with Dave about who knows what. But it was a common occurrence and welcomed. As MIRT grew and expanded, some of this started to wane. Honestly, it got squashed big time with Covid. Caregivers weren’t allowed into the hospital for almost a year. We are allowed in now, but we are all wearing masks, and social distancing is still in play, so it’s hard to connect visually. Little by little, contact is beginning to occur.
Goodness Village was also frustrated as they used to support us more on our stays here. But with Covid, they were practicing no contact support. It has been a rough time for the caregivers. We would drop off our loved ones who would have human interaction and conversation while we headed back to the apartment alone and waited for them to call us to pick them up. The director Kim Burket alerted me to the struggles on a previous stay for caregivers and the isolation. I so appreciated hearing that from her and was able to bring many things to keep me busy and engaged while alone.
While things have opened up ever so slightly on this trip, Kim has three Car T patients staying with Goodness Village and asked us all if we would like to be connected. We all said, “YES!” and now we are connected!
Yesterday, the stars aligned, and we were all in Infusion B while doing various things in our Car T journey! Boy, was that fun to meet in person after texting back and forth over the last three weeks and a few live phone calls. So KUDOS to Kim for making this happen! It was wonderful. Hopefully, we will get more support in the future, things open up, and we will find a new normal. I know that UAMS/MIRT will be working on putting some of these things back in place if they haven’t already.
(And yesterday when Dave was in infusion B he needed NO SUPPORTIVE MEASURES! Wow was that good news! He also managed to talk to the next Car T patient and her caregiver about his experience. It was very encouraging to them.)
