In New York

In New York

Monday, 22 August 2011


We haven't been making plans lately. I hadn't thought about it, but a meeting when we were in Dublin gave me pause for thought. For the past year Roch has been in contact through the PLM (Patientslikeme) website with a patient like him (R) who lives in Dublin with his wife (A). R was diagnosed with MND last year. One afternoon last month they came to visit us. I'm sure they were as nervous as we were. After all, we'd never met before. None of us knew quite what to expect. I think I can say, at least from our point of view, that the afternoon was a success. We all got on really well and you know what? Now don't take this the wrong way, but it was such a relief to spend time with people who really do understand, because they are living through MND too. R was the only person we met in Ireland who thought Roch looked well! He did look well! It really cheered Roch up. You might have expected some mutual bemoaning of fate, but after an initial agreed 'Well, MND is shit really isn't it?' we didn't waste our time beating our breasts and pitying each other. In fact, pity was conspicuous by its absence. It all felt very liberating. We got down to more important things, sharing experiences, listening to each other and having a laugh. Roch's MND is further advanced than R's and so we had some hopefully useful tips to share with them. But that's not to say they didn't teach me anything. They reminded me of us in the first eighteen months after diagnosis. They are determined to get out there and do things while R still can. We were like that. We brought the family to New York, we went to Tenerife together (first holiday alone), we went back to Venice, we had a wonderful holiday in Somerset. We made plans. But our meeting with R & A made me realise that somewhere along the way we stopped planning ahead.

We've both been feeling low, easily daunted - but he is not housebound, not by a long shot. It is pointless and in fact, damaging to dwell on what he cannot do. Of late, I think we have both been guilty of this. Rather count our blessings and concentrate on what he CAN DO. He can walk a little bit, with two sticks, he can drive, he can be wheeled around in a wheelchair (let's get that scooter and he won't have to rely on other people!). He can eat, drink and be merry and smoke a cigar or two. He can still enjoy life and I can enjoy life with him.

It's going to be harder to travel, but we've decided that we've got to start making plans again. Roch has set the ball rolling and is in the throes of arranging a 'Stag' weekend in Dublin in November to celebrate The Big Birthday! It's rather an ambitious project, given recent reluctance to go down the High Street for a coffee, but It's very 'Roch' to make that leap. Nothing if not enthusiastic, once he takes the project on board. There are plenty of helpers ready and willing to reconnoitre, and make arrangements and bookings.

I've started rather more modestly by booking a weekend away for us at a hotel in the New Forest, to celebrate our 21st Wedding Anniversary, which is coming up at the end of the month.

Plans are already afoot for the now traditional Family Christmas Party.

We've decided to look into taking a cruise next year (February?) and we're currently contemplating another family trip to New York. It can be done. What's the phrase I'm looking for folks? Quoting our own Bertie (Aherne) "A lot done, more to do."

1 comment:

  1. I love this whole post. That was a great change of perspective, to have that other couple over. Somehow, you got more positive about travel possibilities. I would say that was a good visit. It warms my heart, visualizing all of those milestones: Big Birthday, the anniversary. These are all doable and uplifting, and rightly celebrated occasions. I feel good about this direction. Plus, one, so far, involves Ireland.

    There is a spectrum of travel. Such as taking multiple trains and staying at hostels for two weeks, constantly on the move, every day (exhausting and most have done it); to a one transport mode, straight to the check-in and take your shoes off and read books for two weeks with fine food and drink (many of us have done that). As far as planning, the devil is in the details.

    You have done it before, and you can do it again. I say, by all means, celebrate the milestones, and make humane and doable travel plans. Yes!
    L. from California N.B. Californians think Roch looks GOOD