Through my friend Tineke, who works at a charity in Leiden, I’ve gotten my hands on a report I get to edit. The report entails plans for an internet cafe in a poorer neighbourhood. It’s agreeable work; correcting, removing and clarifying the text. Besides, it’s a fun and well-thought-out project. I’ll also be involved in the organisation’s annual report. It’s a welcome addition to my daily routine.
On Friday, June 7th, I woke up at quarter to 7 with a headache, breathing heavily like my airways are blocked by mucus. I wanted to get out of bed quickly. The headache subsided. It tainted the rest of my day. Was is done for? It wouldn’t be a very convenient time. I was afraid to go to bed that night. But I had a good night’s sleep and woke up without any issues. Fortunately, it has been like that all week.
On Saturday, June 7th, Ineke would have been 49 years old. Her boyfriend did a show with his band in Zoeterwoude, the band Ineke used to be a part of. He did a special segment of six songs Ineke loved. Being there was hard. Hannie, a fellow ALS patient was there too. We sat next to each other, our husbands behind us. When the band took a break, the dancing started. Both of us were lost for words. I left. I miss Ineke’s sparkling, dazzling personality, despite the fact that I knew her in writing only.
It became obvious that we’re not part of the concert-going crowd. Floor was the only one who dressed up. Hein decided last-minute to change from his office attire into a t-shirt and a cool jacket. We left at 8, way too late, and got stuck in the ‘Borsato traffic jam’. The concert commenced at half past 8, but we only got there at half past 9 and we would have been later, if it hadn’t been for invalid parking. It was an impressive sight, a filled football stadium. What followed was another misconception. We thought the disabled would have some sort of shelter from the rain. We thought wrong. In the roofless stadium, they had built some bleachers facilitating about 40 disabled people and their companions. Above us, the clouds had turned grey. Ward was the only one who had brought a raincoat. But we were ready for the concert to begin. After Marco sang a ballad while suspended from a crane, BLØF took the stage. When they were done, Marco sang his greatest hits, everyone sang along. Sadly, we had missed Sita’s performance. Floor was in charge of food and drinks. Ward was mighty impressed. Were they the youngest people there? At 11 a thunderstorm started. After 10 minutes we called it a night. I didn’t feel like getting sick or getting stuck leaving the stadium.
I survived this year’s first tropical day. We kept the windows and doors shut to keep the cool in, cool being 24 degrees. The room became a safe harbour from the heat for everyone. I just can’t take the heat anymore. My night was horrific. I woke up as many as ten times and hein had to roll me on my side.
June 21st, World ALS Day
We should have been in Uden today, where World ALS Day took place. But we decided not to go. To my surprise, the ALS charities gave me a bouquet of flowers the night beforehand. I immediately felt guilty for not going. Still, Uden is a long ways away for a minimal programme where meeting each other is the main selling point. The thing is; most people I know weren’t going either. Meeting new people requires a certain attitude, one I didn’t feel I could muster up. Thus, we stayed home.
During a car trip, I was sitting in my wheelchair, stiff as a board. As a consequence, my neck hurt. It got worse during the following couple of days. It hurts at night, too. After taking a few painkillers, the pain subsided. I don’t need this right now. I need my neck for everything I do, eating, drinking, controlling my cursor. I cancelled some appointments, I get tired easily. Once again, I realised how lucky I am that ALS is not painful. If it was, I don’t think I would have lasted this long.