Passover is the central family holiday on the Jewish calendar. Jewish families come together to celebrate at the Passover Seder the Exodus of the ancient Israelites from Egypt. Tables are packed with guests and overflow with food as participants read through the Passover Haggadah. Weeks of cooking, cleaning and preparation all come together on the Seder nights into a full-blown celebration of freedom from Egyptian bondage. Unfortunately, brain injuries suffered in the wake of a stroke or traumatic brain injury event can impact a survivor’s holiday experience. There is a tremendous beauty in the Passover Seder but after a brain injury, there are new concerns that survivors and their families may need to consider. This post will identify some of those concerns and make a few suggestions to aid in addressing them.
There are a number of issues that may need to be addressed regarding the location of a Passover Seder. First, if the survivor is in a wheelchair or uses another assistive device to aid mobility and is going to someone else’s home, is that home sufficiently accessible? Keep in mind that it is much easier to get a wheelchair across a hard floor than across carpeting. Even thin carpet can present difficulties when attempting to turn a wheelchair. Additionally, is there enough room in the bathroom for a wheelchair? Should the survivor bring along a urinal if it is too hard to access the toilet? If the survivor has problems with incontinence, is there somewhere available that the survivor could clean up or change clothes if necessary? Some families of brain injury survivors may find that it is easier to host Seders at their own homes rather than travel to the homes of others since their own homes have already been adapted to the needs of the survivors. Survivors and their families should also consider the physical layout of the rooms where a celebration will take place. For instance, it may help to move tables and chairs into a different configuration in order to make it easier for the survivor to move through. Often, seders take place around a large table. The survivor may find it easier to sit at the end of the table, particularly if he or she is in a wheelchair, than to sit at the side of that table. Also, how close does the survivor need to be to a bathroom or an exit? Some survivors have urinary urges that need to be attended to particularly quickly or may need to make a quick exit in order to counteract the detrimental effects of over-stimulation. There are many other practical issues to consider regarding the set-up of the holiday meal. Can the survivor reach a given dish or will he or she need help? Has silverware been left on a counter that is too high for the survivor to reach? Can the front of the survivor’s wheelchair fit under the table or will the table need to be raised? If the survivor uses an augmentative speech device like a letter board, is there room at the table for it? Is a side table perhaps needed for the device to be placed upon? Small changes in room and furniture layouts can make a huge difference to both a survivor’s sense of inclusion and his or her overall enjoyment of the Passover celebration.
Survivors and their families will also want to put thought into how loud a seder may be. Some survivors find that they are more sensitive to noise than previously and that loud noises may now provide a catalyst for unwanted agitation and/or anger. These survivors may benefit from attending smaller seders or from being sat away from loud children and other factors contributing unduly to agitation.
Another practical issue relates to the drinking of the four cups of wine on Passover. The cups of wine take center stage during much of the seder, yet many survivors are unable to drink alcohol as it now presents that much more significant a health risk. For instance, alcohol mixes poorly with many medications and this dangerous mixture can lead to serious health problems. This obstacle to full participation may lead survivors to feel conflicted about the four cups of wine. The first thing to keep in mind is the vital relevance of consultation with a doctor. If a doctor has identified consumption of alcohol as a serious health risk for the survivor in question, then by Jewish law that person cannot drink the alcohol. It is important to keep in mind that maintaining one’s health is one of the 613 commandment in the Torah and it cannot be violated even to honor the four cups of wine at seder. Many rabbis including Rabbi Soloveitchik (recognized as one of the great rabbinical minds of the 20th century) have ruled that grape juice can be used at seder instead of wine. Families may wish to have grape juice for all seder attendees instead of wine so that a survivor does not feel left out. For those that are unable to drink at all due to swallowing issues and may be worried that they are violating Jewish law by not drinking the four cups, a little historical perspective may provide some particularly helpful insight. The idea that everyone needs to drink four cups is a stricture instituted by Tosafos (a group of rabbis in the Middle Ages). Technically only the seder leader is required to drink.
There are other considerations that bear mention when it comes to the eating and drinking done on Passover. Some individuals cannot eat green, leafy vegetables because they interact poorly with medicines such as blood thinners. This can be an issue as many families use items like parsley during their seder meals. Survivors and their families should consult with doctors to assess if the amounts of these substances being eaten in these circumstances will be enough to interfere with the the medications in question. If that does prove to be the case, rabbis and doctors can help identify alternatives. As example, instead of using parsley as the Karpas vegetable some people use potatoes. Consulting with a doctor and rabbi can help one to make the best adjustments while still adhering to the requirements of the seder meal.
Some brain injury survivors utilize certain dietary aids after their injuries, such as meal supplements and drink thickeners. Survivors and their families may have concerns about whether these items violate the laws of Passover due to being chametz (made from leavened items) and for Ashkenazim, if they are kitniyot (legumes). However, most major supplements and thickeners are kosher for Passover use by those who are sick or are in medical need. The Orthodox Union (OU) has a lengthy list of such options that are kosher for Passover.
The OU also provides a brief guideline on caring for the infirm on Passover:
For those who are Sephardic, as long as the items do not have chametz, they are kosher for Passover as the issue of kitniyot is just an Ashkenazic issue.
Again, as each survivor’s case differs from the next, it is important to check with both the survivor’s doctor and rabbi prior to deciding if something can or cannot be used or ingested. For instance, many times people will believe that something is prohibited only to later find that a rabbi rules that it is in fact allowed.
Another issue that can arise is that seder meals tend to be very large with lots of food and this may impact a survivor’s blood sugar levels if he or she has diabetes. It is important to plan meal choices around this health issue. Survivors and families should tailor their Passover menus as needed to reduce the chance of dangerous fluctuations in blood sugar. Also, it should be kept in mind that seder meals tend to be eaten later than is typical of a normal dinner. For those that have diabetes, it is vital to discuss with a doctor what type of adjustments to medication schedules may be appropriate on the seder nights. The Jewish Diabetes Association (via the Star-K Kosher organization) has a Passover guide for diabetics:
Passover cleaning and meal preparation can be almost as big a component (and sometimes even bigger) of the overall celebration as the actual seder meal itself. Individuals spend many hours cooking and cleaning in preparation for the holiday. This may be difficult for many survivors who are used to doing the cooking and/or cleaning themselves. This may cause survivors to confront feelings of uselessness or worthlessness and can represent a significant alteration to roles as they have been thus far understood. It is important that survivors be allowed to participate in this process in any way that they may be capable. The survivor may not be fully able to cook the chicken that will be eaten as the main course, but perhaps he or she could chop some of the vegetables for the meal or the nuts to be used for the charoset. The survivor may not be able to handle a vacuum to clean the carpet, but perhaps he or she could help with sweeping the floors. The survivor may also be able to help set the table or put out the haggadahs. There is almost always something identifiable that the survivor can help out with if all involved will simply put sufficient effort into determining just what that thing might be. If a survivor is living on his or her own and is unable to sufficiently manage Passover cleaning unassisted, he or she may want to ask friends or family to clean for him or her. Also, many synagogues and Jewish organizations can share means to contact individuals willing to volunteer to clean for those in need or can connect survivors with those willing to do so for a reasonable cost.
Another issue that can come up involves the structure of the Passover Seder. Many brain injury survivors have shorter attention spans than they had previous to their injuries, and many seders tend to be quite lengthy. Fortunately, in recent years there have been a number of haggadahs published designed specifically to make seders shorter. For instance, JewishBoston has a free, downloadable brief haggadah:
For those with extreme difficulties with attention, Rabbi Yonah Bookstein of the Pico Shul states that he has the shortest kosher haggadah available (which allows one to complete the seder in around 10 minutes):
The seder is a very language-heavy service which may present particular difficulties for brain injury survivors with aphasia. Gateways has published a haggadah which is more picture-oriented and includes the use of Boardmaker symbols that many survivors with aphasia already use in conjunction with augmentative speech devices. This haggadah was written by Rebecca Redner and reviewed by a number of rabbis including Rabbi Neal Gold of Temple Shir Tikvah. It was created more to aid youth with special needs, but may be more appropriate than other haggadahs for adult survivors with aphasia.
Matan, an organization serving Jewish youth with disabilities, has a number of Passover resources that translate verbal parts of the Seder into visual representations. Though these picture-centered resources are strictly speaking intended for use by children, adults with aphasia may benefit from an integration of such materials into their Passover activities.
As it is common for family and friends to take turns reading sections of the haggadah during the seder, survivors with aphasia may feel especially left out of during the seder service. But just as with the Passover preparation and cleaning, there is almost always a role the survivor can play in this portion of the seder. For instance, it could be the responsibility of the survivor to dip the green vegetables into the salt water and/or to hand out pieces of matzah to everyone at the seder. The survivor could have the job of pointing to the shankbone, matzah and bitter herb during the section regarding Rabbi Gamliel. Survivors with aphasia do also tend to do better with familiar songs. In spite of a survivor’s struggles with language, he or she might still be just as able to sing the refrain “Dayenu”, as this is a common line that a survivor may well have sung for many years.
Lastly, at some seders there is a general desire to rush through the haggadah to reach the meal or to finish the second half of the haggadah quickly. Family members and loved ones need to take care to afford sufficient consideration to survivors now contending with slower processing speeds and keep in mind that these survivors will now require that the seder be proceeded through at a slower pace than most may be inclined to attempt.
These are just a few suggestions regarding areas in the Passover Seder that may need to be adjusted after a brain injury in order to better ensure a survivor’s full participation and enjoyment. Wishing to all a wonderful and meaningful post-injury Passover!
Thank you to Rabbi Joel Levinson of Temple Beth El of Patchogue for reviewing the content of this post and Rabbi Daniel Masri of Beth Rambam of Houston for providing information on Sephardic practice.
Learn about brain injury treatment services at the Transitional Learning Center: tlcrehab.org